Our Issy

I haven't shared much about the situation with our Issy - it isn't really my story to share - but Rox and Jon have said they are okay with me posting about it, so I am going to be off-loading some pretty deep feelings here today.

One of my favourite photos of Issy, taken by "Little Things Photography"

When Issy was about 2 1/2 years old, we started noticing some "red flags", that indicated that something wasn't right.   Okay, I take that back - Issy is wonderfully perfect, in her own unique way!  But, when she was about 2 1/2, we noticed some things about her that set her apart from her peers.  At that point, the differences were subtle, and we went back and forth on whether there was indeed something to be concerned about or not.

For me personally, the day I accepted that Issy was different was the day that Roxy and I watched the final ballet class of the year when Issy was 3, nearly 4, years old.  Parents and grandparents were invited to watch the class, whereas normally we sat outside.  That whole class, Issy was in her own little world. The other kids all did exactly as the teacher told them to do and Issy wafted about, absolutely entranced, loving every minute, doing exactly as she pleased.  At the time, I was completely gutted, by the time we got to the car I was literally fighting back the sobs.  Over time I have come to appreciate the fact that, although that situation made it glaringly obvious that Issy is not like the average child her age, in that moment she was as happy as can be, blissed out on the magic of dancing to the beat of her own drum.

Before we left South Africa, Rox and Jon took Issy to a number of professionals: Occupational therapists, educational psychologists, speech therapist, play therapist (each one referred them to the next one...) although the results pointed to there being something going on, the tests were largely inconclusive, mainly because Issy was still so young, and a lot of the tests are designed for an older child.  Paula is a Speech Therapist and she has always had a special interest in Autism Spectrum Disorder (ASD), she felt that a lot of the red flags we were noticing pointed to ASD.  So we came to the UK not really sure what was going on with our Issy, but by that point we were fairly certain something was going on and our suspicions pointed to  ASD.

Issy started school here shortly after our arrival and it became clear pretty quickly that she was having a lot of difficulty with the work and also with the school setting.  She had been in a lovely, very small and cosy nursery school back in SA - the type of place where she could crawl onto the teacher's lap at storytime - and this was a completely different situation, much more formal and structured.  A couple of months after she started Rox and Jon had a meeting with Issy's teacher and she raised a number of the same "red flags" that we had noticed with our Iss.  She suggested a further meeting with herself and the Special Educational Needs (SEN) teacher.  This duly happened and the paperwork was then put in place to have Issy formally declared a SEN pupil and a referral was also sent to a Paediatrician, to start the process to get her diagnosed.  The school were absolutely fantastic, they have a number of programs for the SEN children, including a therapy dog (Ralph) who comes to the school once a week - the children take part in a reading program where they read to Ralph, as it has been proven that children find it less intimidating to read to a dog than to a teacher and this can help to break down barriers to reading.

In the meantime, it got to a point where the family as a whole couldn't bear to see Issy so unhappy at school, she was having terrible night terrors and complete emotional meltdowns and had become horribly withdrawn.  By this point our Issy was a shadow of the happy, bouncy, little girl we knew.  Rox was homeschooled for a number of years as a child and she is a teacher by profession, with some experience of teaching at a fantastic school for children with special needs; so it was a logical step to begin homeschooling Issy.  After much discussion regarding the practial aspects of homeschooling, the decision was made in late May to formally withdraw Issy from school.  Roxy homeschools Issy in the mornings and I take care of Danny - on Thursday mornings I homeschool Issy while Rox and Danny go to a toddler group and on Fridays the same happens when Rox and Dan go to swimming lessons.  The change in our Iss has been remarkable, she is back to her normal self and is thriving in the nurturing home environment.  Her school work has come on in leaps and bounds as Roxy can give her all the one-on-one attention she needs, and can tailor the curriculum to go at Issy's pace.

There are still significant issues - while Maths comes easily to Issy, phonics and reading are really difficult for her.  She also has some issues with speech. She will need OT and Speech therapy for sure.

Last week we heard  back from the paediatrician and he has referred Issy to a Neuro-developmental centre for further tests and diagnosis.  On Thursday Roxy had to go to the school to collect the referral documents from the SEN teacher, the teacher was really sweet and before handing the documents to Rox, warned her that it would be a "tough read".  She reiterated that the referrals don't look for the positives, the focus will always be on what the child CAN'T do.  She wasn't kidding.  

Since we began noticing differences in Issy, I have always felt that God gave us the little girl He knew we would love and treasure.  Issy is like a great, big ray of sunlight in my life - because of the unique way in which she looks at life, she has made ME see things in a different and very special way.  She has the most incredible imagination and has introduced me to a world where the lounge becomes a pirate ship and this chubby old Nan becomes a mermaid... life with Iss is never dull and always magical.  I treasure every single thing about her.

Paula and Cal's wedding is a case in point.  Paula and Issy have an incredible connection, a bond that goes so, so deep.  Issy was a flower-girl at the wedding, and from the outset we knew that things might not go exactly as scripted.  Let's just say Issy was an integral part of the wedding, and it is quite possible that Cal married both Paula and Issy!  Issy was right up there and in on the vows, she was there for the first dance, she was just in on this thing 100%, there was no stopping her!  I have no doubt that some of the guests at the wedding were horrified!  I will just be forever thankful that Paula and Cal were so gracious and welcoming in their acceptance of Issy's presence.  They were adamant that Issy was to be a part of it all, to the extent that she wanted to be there.  To that little girl, that wedding was EVERYTHING! 6 months later and she still mentions it daily and we act out the ceremony regularly.

no, the bucket was not meant to be a part of the arrangement, that was Issy's artistic take on things, and yes, this is happening during the vows!

Yup, this is the first dance and yes, that is Paula's veil on Issy.....Photos by Little Things Photography 

Reading that referral was devastating to me.  As Rox said, there was nothing in there that we didn't already know and, in fact, there are some new issues that have come to light since the referral was written.  But boy-oh-boy, seeing it all laid out in black and white, with no sugar-coating whatsoever was just AWFUL.  It was confronting to say the least.  I have tried to analyse why I felt so broken about it all and I think the bottom line is that when we as a family voice our concerns about Issy, I am okay with that, but when someone from outside our circle shines a spotlight on her issues, I am not at all okay with that!  It brings out the mamma-bear in me and all I want to do is protect our precious little girl.

So yeah, it has been a tough, tough week and my instinct is to take our sweet girl and head for the hills.  But I know that, even though in our hearts we know what's going on, we need that formal diagnosis and I know that our little Issy is going to have to face enormous challenges and she is going to need each and every one of us to be there for her, to understand her ways, to advocate for her, to hug her and tell her everything is going to be okay.  So this Nana will cry in private and put on her big girl panties and show up for her Issy-girl every step of the way.  Because that's what Mermaid-Nanas do!


Brit said...

This was so difficult to read but I know that Issy has been blessed with the most beautiful family and she will touch so many lives in her own special way

allie. said...

What a beautiful, gut wrenching post! What a gorgeous magical child. And how blesses she is in the family around her. Thank you for sharing your heart with us.

Colleen said...

How beautifully written and such a special read Gill. Your Issy is a little stunner and God's little girl. With you all by her side she is going to be amazingly OK. He makes no mistakes and gave her to the perfect family. May He comfort, guide and strengthen you all as you walk this journey through life with her ❤

Colleen said...

What a wonderful read and so beautifully written Gill. Your Issy is a little stunner. God makes no mistakes and placed her in the best family for her. May He comfort, strengthen and guide you all as you walk this journey through life with her. She is going to be just perfect. Bless you ❤

Cally Riberts said...

Thank you for sharing your heart in this post. Issy is lucky to be in your family and for the amazing love and support she has. I will keep you all in my prayers. Sending you all lots of love. Xx