Revisiting the Issy situation

My previous post about Issy and the challenges we are facing drew many responses.  Thank-you so much to all our friends and family who commented, sent private messages and just poured love and kindness over us, it means so much to each and every one of us.  Although the post was pretty much about my personal responses to Issy’s condition and specifically to her referral letter, as you can imagine, the situation is enormously difficult for the whole family and especially for Roxy and Jon.  They really need all of our love and prayers as they navigate these new and unfamiliar waters.  Each of us has our own way of dealing with things, mine is to spew it all out in blog posts!
Having said that, I feel like I really need to point out a couple of things.  Please know that my intentions in saying this are good.

·        We are not going to be able to pray Issy’s condition away.  I may not be a church-goer, but my faith is strong and my Father in heaven and I have had many gentle, and some rather heated, exchanges about this situation.  Believe me when I say that we have ALL prayed about this.  Issy’s condition has literally brought us to our knees.  I think we have pretty much gone through the 5 stages of grief and have come to a point of acceptance.  I now firmly believe that God has His hand over Issy and He has created her exactly as she should be.  Issy doesn’t need healing, Issy needs help.  I believe that prayer will help us cope with the challenges we face, it will help strengthen our resolve, it will help us to be patient, it will help Issy to face her challenges with courage…. But it will NOT make this “go away”.  So, if your take on this is different, I respect that, but please, please respect our feelings about this too. 

·        Denial is not an option.  There is no denying that we are dealing with something here.  This isn't us "cooking something up" or being paranoid.  We may not know the exact nature of Issy’s condition at this point (we are still awaiting an official diagnosis, although we, and the professionals who have seen Issy, have strong suspicions) and we don’t know how much her future will be affected, but the bottom line is that there is a condition that we are dealing with.  Pretending it isn’t there and avoiding talking about it is hurtful rather than helpful.  Saying that we shouldn’t worry and that Issy will “grow out of this”, while probably said with the best of intentions, makes it harder for us to share our concerns with you.  I think that anyone, when wrestling with a life-changing situation, would rather their friends and family be there by their side in the trenches, than standing on the outside making like there isn’t a war going on!

·        Bad parenting is not to blame for Issy’s behaviours.  This is such a tough one and something I still wrestle with!  I physically cringe when I think of all the times I would tell Roxy to “discipline that child, her behaviour is completely unacceptable!”   I’ve learnt so much since then, but that doesn’t make it any easier to deal with!  Our precious Issy has some REALLY annoying behaviours.  She has some severe sensory processing issues (SPD).  When Issy feels over-excited, over-tired or stressed she will do weird things, like lick you, chew her clothes, or tickle you again and again, she also gets really hyper and she may have toileting accidents…  When she is really overwhelmed, she will have massive emotional melt-downs that look like tantrums, or horrific night terrors (until you have witnessed one of these, you can’t imagine what it is like!).  When Issy is excited to see you she may completely ignore you at first (strange, but true!) or she may overwhelm you with demands for your attention.  Issy also does something called “masking” where she will appear passive, even in a stressful situation, and then later on, when she is in a “safe” environment eg when she gets home, all those suppressed emotions come bubbling out.  <= this was the story of our lives when Issy was still at school.  Issy often displays an extremely high pain threshold - for example she had severe ear-ache a few months ago, she was very moody for a few days, but Roxy and Jon only realised she was in pain after Issy's ear-drum actually burst!  She also has very fixed ideas about things, for example she will only eat spaghetti separately from it’s sauce, she doesn’t like her foods mixed up on her plate, she insists on taking a specific route to a place…. As a family we are learning ways to cope with all of this, but we are still new at it and it is incredibly challenging.  The fact that we have recently emigrated and are still finding our feet in our new home makes it even harder. 

This situation is as awkward for us as it is for you. It is no fun dealing with some of this stuff and it’s even less fun talking about it, so it's very tempting to gloss over it. The thing is, that's not a particularly helpful or healthy response, to get the understanding and support we need, we kind of have to get over ourselves and tell you where we are at. We are going through some really horrible stuff, and we need you, we (and particularly Issy, Rox and Jon) need our friends and family to be there for us.


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!