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.