Ava goes in to Year 2, Seren (who has Down’s syndrome) goes in to Reception Class in the same school as Ava… Violet (aged 2) is still at pre-school.

When summer term finished and the school holidays began, I got a little emotional.

What a different set of emotions than from when Ava finished her preschool years and was due to head in to “Big School”.  I was stressed when Ava was 4, I had an appeal, she didn’t get in to the school I wanted, it was stressful, long, laborious.  I had a newborn to deal with over the summer holidays who was in the process of undergoing a spina bifida diagnosis… it was hell on earth.

By the time September came and we found out that Ava had indeed got a place at our local school, both Ava and I were so delighted that she ran in on her first day.  They were woefully under prepared for her (no name tag or peg was waiting etc), and yet she still had a grin on her face.  Relief. Utter relief.

Seren on the other hand – the polar opposite.  She had a Statement of Special Educational Needs in place by February 2014, so I got to name her school and I knew before the other parents that my daughter had got a place at the school I had chosen.  Our local school.  No fraught wait, no chance of being allocated a different school.  No chance of having to prepare an appeal.

The emotion that hit me the most was at the time of her finishing at her pre-school, on her last day.

Other than when she was at home, her pre-school was her safest place.  A place where the staff knew her and where she loved to go.  I had underestimated how I would feel, convincing myself that I was still a “Paddocks Mum” because Violet attends there now, but I got that all familiar sucker-punch to the gut on the last day and my bottom lip went.  I am not an pretty-crier sadly, so my face was very blotchy when I left.

Seren on the other hand?  She didn’t understand that it was the end of Paddocks Pre-School when she left at the end of the summer term.  That realisation came in September when she started her new school, in a uniform, in reception class with a bunch of strangers.

I do want to briefly touch on our decision to send Seren to mainstream school.  When Seren was born, I had visions of sending her to the most well equipped special school I could find.  Trust me, special schools are amazing (mostly, certainly the ones I know of round here!).  Swimming pools, sensory rooms, specialist teachers, services etc… all catering for children with special needs.  Kids there do get a top class education, tailored around their abilities and their needs.  What actually transpired as Seren got older was that I had pictured Seren aged 4 in terms of the literature that was available to me online.  I did not for one second consider that each child who has Down’s syndrome might be unique.  I read the books, the leaflets, the websites…. God damn it, I GOOGLED!!!!  Google told me a whole host of things and while none of it bothered me or scared me, it just made me picture a future for my child that has turned out to be entirely different from the reality that I am living.

Of course, as Seren grew, I celebrated her achievements with significantly more enthusiasm than Ava’s.  I don’t mean this in a bad way, but we knew Ava would clap her hands, wave, eat independently, walk, talk, be potty trained.  With Seren I read the doom and gloom and wondered if any of it would happen.  Of course it did, but she reached her milestones in her own time – later than a chromosomally boring child 😉 and boy oh boy did we celebrate.

So having gone through a bit of a bumpy patch during my decision making process, we settled on our local school, the one Ava (Seren’s big sister) attended.

Seren and her friend Gus

Sick to the gut with worry over who would be allocated as Seren’s T/A’s (teaching assistants – Seren has 2, one for the morning, one for the afternoon), I could have wept with joy when we were introduced in July this year, they were perfect.  Seren is a very capable, determined and independent little girl.  She could (in many ways) manage without a full time T/A system, but she wouldn’t learn.  She would not be able to access the curriculum as she doesn’t learn in the same way as neuro-typical kids.  The thing is, even some neuro-typical kids can learn better visually, like Seren does.  Seren being in the school is going to be beneficial to all the children in many ways – she will broaden the teachers understanding of how differently kids can learn, she will encourage understanding of differences, acceptance.

Ava came home one day and told me that Boy X (name withheld, for obvious reasons) played with Seren in the big playground and was very kind to her.  I can’t lie, even I was shocked – he is widely known as being one of the more challenging boys in the school.

Anyway, lets backtrack….  September rattled round and on her first day I was determined to be utterly British and maintain my stiff upper lip.  I did this mainly because Seren would be confused and upset by me crying.  I wanted her to see me happy, pleased for her, and so very proud of her on her first day at big school.  I managed.  Just.

Of course she is being a gem… well behaved, well mannered, well liked.  She is a “dream” as one member of staff told me.  She hasn’t had a toileting accident, can identify her name on the table (shuffled name badges every morning), and she can get herself dressed and undressed for PE in a very similar manner (on occasion, better!!!!) than the other kids.  She is just a very clever little kid, who does her best around the fact that she still can’t speak.

Taken by Ava (age 6)

Seren has a lot of speech and language intervention.  Sadly I have to pay for this myself as the NHS provision has been pretty poor, and at worst, non-existant.  I say I have to pay for it, but actually Seren pays for it.  Seren gets DLA, and every penny (and then some of mine) goes on her private speech and language therapist (SaLT), and she is worth her weight in gold!!  Currently Seren is paying for her private SaLT to go in to her school and teach any of the staff involved with Seren how to get the best out of her.  This knowledge wont just benefit Seren, but every other child who needs a little more speech support.

The thing that breaks my heart at the minute is that Seren signs “H” repeatedly every morning and evening.  She is asking for her key workers from pre-school – both of whom have names starting with H.  She doesn’t understand why she isn’t seeing them anymore and sometimes her eyes well and her lip goes.  I tell her she is a “big girl” now and that she goes to school with Ava… I know her heart is breaking though and she misses her special people, the ones she loves the most.

So wind back 5 years, when I was pregnant with a baby who I *knew* had Down’s syndrome following a high risk screen…. All the stuff I read when I was pregnant with her, all the gloom, all the stuff I prepared myself for mentally.  My baby came, the diagnosis came as no shock, but her life has been the greatest shock of them all.  She is simply magnificent.