Since completing the 0 – 36 month reflection on Sophia’s life last November I’ve been attempting to read more information on the actual workings of the brain. I’m probably that very dangerous person, someone who knows only a microscopic fraction but feels impelled to act / react on that knowledge! The mass I’ve read and the little I’ve taken in has led me to feel even more passionate about the need to stimulate profoundly disabled children in their first years of life. The following is an overview of what I’ve learned and my reaction!
Brain plasticity continues throughout our lives. The brain is capable of taking on new information and creating new neuronal & synaptic connections essential for maintaining its health into old age and for continuous development throughout the whole of our lives; but the critical period of brain development is the pre-school early years period and primarily the first 0 – 36 months of life. This 0 – 36 month period (give or take a few months depending on the child) is when the brain is at its most receptive for creating links to enable our body and mind to work, hence it is essential that a child is saturated with stimulation during this period if they are to reach their maximum potential and this is especially true for a child with profound additional needs. An impaired brain requires greater assistance to develop and this critical period provides the essential foundations for our lives to come. The past 80 years have seen a huge influx of investigations into how the brain works and since the invention of EEGs (electroencephalograms) and MRI (magnetic resonance imaging) scanners, the results of brain experiments have never been as easy to view, track and record.
With the knowledge of this universally accepted neuroscientific discovery in mind I am hugely concerned by the lack of emphasis placed on this critical period by medical experts when dealing with the parents and carers of children with disabilities. At no point did any doctor or specialist say to me: “Look, your child has been dealt a hideously crappy card, but you as her carer can do something to help her achieve her maximum potential, whatever that maximum potential may be.” (Or words to that effect!) They didn’t have to put a developmental percentage tag on it, all I needed to know was that by working her endlessly I was helping her. I would have massively valued that honesty and input in the early days when I was groping in the dark, working on a wing and a prayer just in case something I was doing was beneficial.
Any stimulation for a child is beneficial, “the brain grows with use” as my development guru, Glenn Doman, constantly reiterated in his books and we now have years of experiments plus MRI and EEG images to prove it. So why aren’t we told this? Why are the parents and carers treated with kid gloves? are the medical specialists terrified of piling pressure on us? I appreciate that we could be in melt-down mode (god knows I have been there on too numerous an occasion to recount), and perhaps we do feel unable to cope with the enormity of what lays ahead, but you know what? Our children deserve for their parents and carers to be made to face up to their responsibilities to stimulate and develop them as much as possible. Or, if the parents/carers are unable to do this for whatever reason (work, health, looking after other children etc.) then they need to know what the person standing in for them should do to ensure their child has a chance to be more than a locked in, completely dependent soul reliant upon others for every single thing for the rest of their life. If, as we are constantly told in education and social care, ‘the needs of the child come first’ then the medical specialists dealing with us the parents and carers, should be responsible for laying it on the line and telling us how important this period is for our child’s future.
Am I being unduly harsh? From my experience as the parent of a profoundly disabled bundle of joy I absolutely believe that to not be told this vital information is tantamount to child abuse because we are allowing the worst possible future for our children and what is that if it isn’t child abuse? If our children were typically developing this wouldn’t be accepted so why should it be accepted for our special children simply because they have far more complex needs? Once our children are in full-time education or child-care all we hear is how important it is to put the needs of the child first, but if they’re not going into childcare until they’re 3 or older, then that critical period of potential development has been missed and if they’re going into childcare younger and the settings aren’t equipped to ensure the special child receives constant stimulation, then that too is developmental neglect. How can this be allowed?
On the About page of this blog, I acknowledge how incredibly fortunate we are with Sophia in that her condition isn’t degenerative and she doesn’t require constant medical intervention be it the result of repeat fits or the nature of her condition. We are incredibly fortunate. My heart absolutely goes out to the parents of children with degenerative conditions, I do not know how they cope living with the pain of such impending suffering and sadness. Sophia’s development, as gentle as it is, is an ongoing trajectory of joy. Just today my heart sang when, at storytime at the library, she crawled over to the two seater sofa, pulled herself up to standing and then proceeded to try desperately to climb onto it (which she managed with a tiny bit of help) so that she could lean over the sofa back and reach the ice-cream tub filled with coloured pencils to do some mark-making with the rest of the children. We hadn’t been to storytime for weeks and I usually lift her onto the sofa to enable her to join in with the other children so the fact that she was determined to do it herself this time – well, I repeat, my heart sang. If your child has a degenerative condition, how can your heart ever sing? And the stress of having a child who requires constant medical attention to survive must be horrendously stressful and exhausting in the extreme. But taking these two heartbreaking scenarios out of the equation, stimulation can only be of benefit to a child.
We owe it to our children to ensure they have the absolute best possible start in life and I really do feel that it’s time the health profession recognised their responsibility for ensuring that parents and carers are forced to face the reality of their actions. If they can’t cope for whatever reason, then social services etc. could look at ways to support them, but for the sake of the child, they need to appreciate that their actions can make a huge difference to their child’s development and future life. Maybe I am harsh, but I’ve seen far too many children with far less brain damage than Sophia able to do a fraction of what she can because they have not been constantly stimulated during their critical period of brain development and it is truly heartbreaking to witness. Even if a child doesn’t have a diagnosis, if there is the inkling of a feeling that something isn’t right, instead of waiting and hoping and keeping fingers crossed, why not start stimulating and being proactive immediately? It can only help.
The last thing in the world I would want to do is place pressure on those parents who missed the opportunity of developing their child during this critical period but going forward, from hereon in, there is simply no excuse for letting this happen ever again.