Tired and Emotional

This week, I prayed for Friday to hurry up.

Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.

Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".

Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."

She hasn't even started yet and they're talking about removing support?

Not even removing when appropriate?

I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or  physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.

It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.

Thank goodness for the rewards.

Splish, Splash Bouce

We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. 

This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end. 

We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.

I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right.




....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.

"OW!"

Children are many things, but one thing they definitely are are great levellers. They are excellent at humbling us older "wiser" types by themselves and their defiant innocence and are also good at breaking down barriers between fellow parents that otherwise loom large. I think all us parents are guilty in some capacity of having looked at other parents whom often we know next to nothing about and view aspects of their child rearing with contempt, mild horror or snobbery. I would never do that, we might think. MY child would never dream of doing ... [insert here]....

Until of course, they do.

Even the most perfect and well behaved cherubs have off days. Even the nicest ones learn by pushing boundaries or going a bit loopy. Sometimes the little horrors that we adore and idolise have several off days in a row, leaving you wondering where an earth you went wrong.

In the early days, fresh with enthusiasm and ideals about How I Would Do Things, I thought I had a fairly watertight plan of action to things. Fast forward almost 2 years, and weary cynicism has crept in and the rulebook, or at least dratted baby books and parenting manuals, have been thrown out the window or are being used as doorstops. Of course I still make snap judgements about others much as I'd prefer to say I didn't, but now I do have more compassion for other strained parents and care far less about what anyone might think in turn of me. Not because anything is vastly different, just that like many of us down the road of parenthood, I have realised that babies and toddlers have personalities. They have wills of irons, minds of their own and some inherent behaviour that I swear they swap in code at baby groups that they all seem to do at one stage or another. Even the really nice ones.

And so, today I got bitten for the first time.

Wriggles was having a tantrum. She is teething and it was hot all day. Refusing to nap, I tried in desperation to get her to listen to storytime at the library. She crawled off and went up and down the stairs, shrieking loudly as she went. God forbid, a little boy was in her path, listening innocently to the lady reading a circle of angels a story. Shriek shriek shriek. To try and save the sanity of the little group who were previously shrouded in peace, I removed my small child to go and menace somewhere a few metres away instead. She roared in defiance. I was enjoying THAT PATCH OF CARPET! (I think was the translation). In her thrashings of displeasure, she gave herself a very minor bump of the head which made her even crosser and then sunk her teeth into my arms.

Then I broke the peace of the library and emitted a surprised and pained "OW!"

Although I was surprised at the timing, I was not surprised at the bite. I have been semi-expecting to get bitten at least once, as all the offspring of people I know (apart from those owning the very small) and those I don't whom I may have earwigged on, have been bitten in retaliation, confusion or experimentation by now. I have been under no illusion that I have a child so angelic she would never do such a thing, but have been suspiciously waiting for her to strike and pick her moment. Wriggles is far from a thug, but she is a toddler. A teething toddler who is beginning to discover the power of "no" and not always getting her own way. I do hope it is a one off, but I suspect it is heralding the departure of my snuggly baby and arrival of a foot stomper but (please!) equally delightful toddler-proper.

Like I warily expected the inevitable nibbling of my arm (nibbling sounds too gentle; I have marks to prove it) I expect her to shout at me, have tantrums, mortify me in public, cause me to snap and probably as a teenager tell me I've ruined her life at least once a year if not once a week. Not because I expect or think that she will be a badly behaved child, just that she is a child. And children make mistakes and learn and err, exercise their emotions for want of a better phrase! Even those where the sun shines from every orifice are not perfect. At least they are, possibly, but not every single moment of every day. Which means likewise, there probably isn't a perfect parent out there all the time. Even those that seem to have tripped out of a Boden catalogue with their 2.4 families, pedigree dog and Aga have crap moments when they curse the fruit of their loins and all their teeth/chattering/insults/mess/toys left out ripe for tripping over. 


I just wish they told you earlier!