How much do they understand?

Having Children with Complex needs was something that in part we chose to do! The needs of the children we chose to take on have turned out to be or progressed to be far more complex than we actually were prepared for. On the whole that's fine, they are our kids and for all families of complex children there are new developments to some degree. Therefore the worry, anxiety, fear and grief are the same for us in man ways as they are for natural parents, especialy in the instances where the progresson or evolvement of new and more complex problems are concerened.
We are really grateful at the ocial Workers we deal with for Rosie and Eve are really on board with al of that and have true compassion for the family as a whole and the individual members.
However there are other professionals we work with who really dont seem to "get" that. There are friends, aquaintances and casual passers by too who suspect that because we adopted the children we dont hav an emotional attatchment.
Then there are those who dont understand what the numerous medical labels mean.
Epilepsy dos not always ,or even mostly, involve falling to the floor shaking violently!
Now I can undersand someone who has never had to consider epilepsy having that oppinion, however when you are caring for someone with complex epilepsy, for whom you have a comprehensive epilepsy care plan detailing four different manifestations of epilepsy with type specific actions, then I expect you to realise that just because she is not falling to the floor shaking, the action she displays exactly matching the description in type three of the care plan is probably seizure!
If your role is "epilepsy nurse specialist" then I would really expect you to realise that jerking does not accompany all seizure types.
Take a child who loves food, to the point almost of obsession, has a real taste for the things she enjoys, add in an increasing difficulty with swalowing, a problem with movement of food along the gastric tract, develop that to a point where swallowing becomes totally unsafe, tell this child she can no longer eat food but must have a diet of milk feed through the tube in her tummy. This child has a limited understanding of the world, yet copes incredibly well from Christmas Eve through the holidays and back to school.
Then you make well over 50% of her school day, day after day, all term, focus on food...yet still you dont get why she is a bit more stroppy, less keen to cooperate, not socialising quite as well as she did...I really find it hard to accept you dont have the imagination to vary things somewhat to accomdate the child's changed lifestyle.

Now take the child who has been diagnosed with a prgressive degenerative disorder, over the last two years she has regresed from a bright interactive child enjoying all there is to offer, loveing her stnding frame, begning to gain confidence in a walker, reaching out pointing eye pointing being a real part of your class, to a child with little or no hed control, extremely limited eye movement, sleeping over half of the school day, still enjoying what she can take part in, still able to smile at you nd look beautiful and extremely photgenic, parents really finding the loss hard to cope with accepting the diagnosis and the ongoing medical findings causing them ongoing anxiety and fear.
Choosing photographs that express the joy of the child that is now to go on work sheets, cards and reports is surely far more appropriate, sensitive and thoughtfull than choosing a photo that is at least two yers old that shows a child sat upright head held up eyes bright and alert..pointing out in dramatic detail what is gone, is less than thoughtful.
Having been told that this photo was hurtful on a Mothers Day Card why was it used again on a report of how that child has achieved this year?
You must have photos showing the gorgeous girl we have now?

How much do you undestand of what Eve's diagnosis means to her and us?
Do you realise her condition is terminal? We dont know how long, we do know that there is an increased risk of a sudden crisis, we are also painfuly aware that her recent acute illness was very nearly one she didnt recover from. Do you understand how quickly she can become so desperately ill?
In the recent swine flu epidemic conerns, coming in to school to work with Eve and other vulnerable children with a heavy cold was not the wisest move!
Can you begin to try to understand how frightened we are of Eve picking up coughs and colds in school...I know right now my conerns are very heightened and probably far too concerned, but she is my daughter and I thought we were losing her.
One part of Eve seems to be holding on with no loss as yet and that is her hearing, she loves to listen to stories and responds appropriately to voices, stories, songs she is able to tell me what she wants to watch and let me know when I get it wrong, often she cannot see the telly but she can follow it by sound. Seeing her listening skills marked on your graph as her biggest loss was quite a shock, The explanation that her inability to react physically to audible prompts had caused that score really upset me, ho can that be?
We love the school the girls go to, they go out of their way in many ways to accomodate two very complex very different girls, they do have much to learn though and some things they need to get right soon.
A long morning discussing the annual reviews, a meeting 10-12 that finished nearer 1.30 a mad dash home as Eve was tiring badly and dropping her sats, needing to be home on her ventolater...too late to visit Jonathan before I pick the others up so David went whilst I sorted Eve and had a few minutes to myself, make some phone calls and oranise tea. So first job get Eve settled on the ventolator, David headed more or less straight off to spend half an hour with Jonathan, Eve onto the settee, ventolator mask into position and the phone rings...Coronary care, can i get there for 3,30 as Jonathan is going for his MRI....ARRGGGHHH, I promsie to do what I can but can make no promises.
Finish hooking Eve up and then ring Debs...thankfully she is able to get here for as near to 3 as pos, so I continue making plans to get there and ensure everyone is taken care off here.

Part of that was making a call to trnsport services about Rosie's transport for after school club, it was a simple time change as her trnsport only takes her on a Tuesday and was able to change the pick up time from 3.15 to 5....all I needed was the LEA to agree to the change....it was as Debbie walked up th path I got that call confirming it was changed...so Rosie would not be home till 5.30 making me feel much more comfortable at leaving them all to it!

I pulled onto the Hospital carpark at 3.25, I rang the ward as I walked in assuring them I was only a minute or two away, I arrived on the ward with the porter! Good timing!

Jonathan was excelent, obviously a little concerned and as time went on and the nosies got louder he was becoming a little spooked but coped really well. Back on the ward I was able to ask what the plan was from now, Apparantly the Cardiologists are sure it is not a cardiac problem, they are awaiting a neurological review and hope to get the report on the MRI tomorrow, they plan to do a doppler test on his neck and a 24 hour ECG but no one knows when they may be.
So we are back to the waiting game!
I arrived home at 5.45, ravenously hungry having had just a packet of crisps and a slice of malt loaf all day, Debs had fed everyone else, and there was enough of the boiled gammon left for me to add to a packet of super noodles!
I havent even looked at the rest of the week! However I have made the decision to cancel my surgery, no way do I have the capcity to cope with oral surgery with the risk of jaw injury right now! The very thought of Rosie headbutting me in the face is enough to make me feel ill! So hopefully they can reschedule that to September and Hopefully the kids will all be a little healthier?????

Oh in the post is a letter from Christina's Peadiatrician, her abdominal scan is normal but her blood tests have shown a possible concern which he will discuss with me at her appointment in July...meanwhile she is still having frequent stomach ache and nausea!
So Please, when can I get off this ride?