Rosie Scribble

My budding journalist

… although I notice she seems to be absorbed in the piece on JLS.

Book review: Where has my little girl gone? By Tanith Carey

Like many parents, the widespread availability of online pornography, the early sexualisation of children and the rise in eating disorders in young people are all areas that concern me greatly. I’m keen to keep my daughter protected without stifling her and I’m committed to giving her the tools to go out into the world prepared and educated so that she can lead the fullest life possible.  I then want her to pass the same information on to her own daughters.

Tanith Carey’s new book Where Has My Little Girl Gone? has proved an excellent source of information in my efforts to get it right for my daughter and help prevent many of the problems I know children can experience - problems that can impact on their lives late into adulthood.

Developmental delay, first steps and a birthday

A visit to the First Step Institute in Tel Aviv took me back to a very dark time in IJ’s life. I wrote about her story early last year in my post Miracle walker. It included the first picture of her walking, taken on holiday in Devon, aged two, and detailed the struggle that lay behind her eventually finding her feet.

She did walk in the end after two years of therapeutic intervention and regular physiotherapy at home, which I carried out with her on a daily basis. Yet always in my mind was the worry that she would not walk, as no-one could make any promises, and that her life would always be limited. She would achieve her full potential, I was certain of that, but I was unsure for very long time of what that potential would be.

So my visit to the First Step Institute brought back a lot of mixed emotions. The Institute specialises in treating and guiding parents of babies and children with developmental delays and special needs. The case studies we heard about showed impressive results with children born very prematurely, with severe needs and a very bleak prognosis, making phenomenal progress, and in many cases finally being able to walk despite the belief they would never do so.

The approach involves an intensive programme involving the whole family who work alongside professionals to ensure the baby’s development potential is maximised. It pays attention to the correlation between the psychomotor development, the sensory system, the skeletal and muscular systems and the level of physical and human interaction of the child with her environment. Once assessed, this information enables the therapist to establish a diagnosis offering a range of options specific to the child’s needs.

No mention of the costs of treatment were made during our visit and it is, I am certain, a very expensive service to access, yet one that parents would certainly be keen to pay to help their child’s future, if financial resources allow. So it is impossible to make direct comparisons between the First Step institute and the service I received from our local NHS, which although a little fragmented and geared towards the needs of the child and not the parent, served us extremely well. With a similar level of financial input it would be interesting to see if the the NHS, and specialist services in the UK, could produce similar results. It is very possible.

Although the First Steps approach is impressive, it is not possible to say how unique it is nor how the approach actually works in practice as little information was given during our brief visit. The importance of assessing child’s developmental milestones and tailoring an approach that works with each individual child does seem widespread practice.

What is clear is that the approach is successful. For parents of babies with developmental delay facing an uncertain future, the approach, developed by Shai Silberbusch and based around his experience of the Feldenkreis method, is certainly one to investigate further. It is highly feasible that elements of the approach could be taken and used in practice in the UK, if they are not being used already.

What I took away from my visit was the fact that when a child is unwell it affects the whole family, so the whole family benefits from care, attention and support, not just the child. The Institute’s holistic approach and the level of support and guidance offered to parents is excellent.

Based on my own experience, I’d like to see more support available for parents when their child is given a bleak diagnosis or diagnosed with a serious illness. Support services are available but can take time to access, and in the initial hours and days after that shock diagnosis, worlds can feel as if they have fallen apart. Someone needs to be there to pick those people up.

Today is IJ’s eighth birthday. She no longer carries with her any medical labels or diagnosis. Those labels did help us to access services designed for children with developmental delay, but we are lucky that she no longer needs the label or the help.

We have been incredibly lucky. My trip to the First Steps Institute reminded me of that. Our lives could have turned out so differently and I am extremely grateful for the help we did receive. It could have been better in parts but, on reflection, for us it was good enough.

I am as exceptionally proud of IJ today as I was when she took those first tentative steps.

I wish her the happiest birthday in the world.

Letting go

It has been important to me, for many many reasons, to ensure that IJ grows up knowing her own mind and is confident in her ability to think for herself and make her own decisions. I’m keen for her to have a confidence I didn’t at that age and for her to be able stand up for herself and what she believes in, whatever that turns out to be.

I also want her her to feel in control of her life, to feel she can choose her own path and know she can change direction if she decides to and I’ll be there for her.

So I’m encouraging her new-found independence, letting her try new things and watching her grow in confidence. It is relief to see that she is happy and confident with no signs of the anxieties I started to develop while young. 

As she starts making detailed list of all the things she thinks she needs for her eight birthday next month I am proud, astounded, moved at the journey the two of us have made together, at how far we have come since those early days when the two of us had no idea where we were going or how we would manage, or if we could even manage at all.

We’ve become a strong team, a solid little unit.

But I can’t cling on to her and keep her with me forever. It can’t remain just the two of us because at some point in the future I have to let her go.

And that letting go is starting already. She doesn’t need me in the way she used to, which is good and positive and exactly what I set out to achieve.

But some days it feels like a development that has come around all too quickly and caught me off guard.

My little girl is growing up and I’m not sure I’m quite ready for it.

On not being needed anymore

IJ calmly announced this morning that she didn’t need me anymore.

She didn’t need me to take her hand, carry her lunchbox and walk with her through the school playground to the spot where she lines up with her friends.

She is able to do this on her own now because she is a grown-up. So all she needed me to do was drop her off at the school gate, turn around and go home.

So I did exactly that.

Sort of.

I dropped her off at the school gate, watched her walk through them, turned around and walked away.

I then walked down the road, through the car park and all the way round the perimeter fence until I was back where I started, at the school gate. There I took up my position, standing behind a tree.

From there I watched her chatting with her friends and when the bell rang I watched her line up and walk through the door of the school, safe and sound. Then I turned and walked away but not before I’d glanced across at several parents doing exactly the same thing.

Tomorrow we’ll be doing the same.  And possibly for at least a year after that.