Sticks and Stones......

As the old adage says, 'Sticks and stones may break my bones, but words will never hurt me'.  That may be true when you are four, but the older you get the more you'd prefer someone to throw a stick at you than say what they are going to say.

In my job as a one-to-one special needs assistant to very young children with Down's Syndrome, I see their parents going through what I have been through over the years and while I can do nothing to prevent it, I can at least offer a little moral support.

One of the most painful things to deal with when my daughter was growing up was the results of professional assessments.  If you are a parent of any child with a disability, you will be familiar with that sinking feeling as you sit there in someone's office and watch your child either fail some task that is deemed to measure their progress or just not co-operate as they don't know this person from Adam.
This professional then tramples with their hobnail boots over any small glimmers of hope you have in your heart by telling you that your child is still at the toddler stage.  Not so bad when your child is still in infant school, pretty devastating when they are approaching adolescence.

Now I recognise and accept that these assessments have to be performed in order to get an idea of progress and to plan how to help the child move on in their physical or mental development.  I do wonder however, if the professional giving out the verdict ever considers the feelings of the parent.  I'm not saying the information should not be passed on, just that it should be passed on sensitively.
Are they aware that the parent is generally already trying their hardest to help their child meet developmental milestones 'on time' and that the slightest knock to their confidence can be incredibly hard to deal with?  Or perhaps the parents are not dealing with their situation well due to personal circumstances, family pressure or even denial, and this information could tip them over the edge?

In my case, I am a very 'stroppy' person - tell me something can't be done and I will move heaven and earth to prove you wrong if I don't agree with you.  After my daughter's birth, professionals told me she would never amount to anything, remain a vegetable and destroy my life.  Sensitively put.  So, 24 years later, now that she has been through mainstream school, attended college and is living a fulfilling life as well as bringing me great joy, I can mentally stick my fingers up at those people and know in my heart they were wrong.

But what if you are not so able to cope with something like this?  Is it ever considered?

The same goes for giving out false hope - things like 'cures', remedies, putting even more effort into trying to jam information into your child's head.  Sometimes that can be just as demoralising, especially when what you try and pin your hopes on fails miserably. 

The above is something I feel strongly about but do not really have any answers to.  As the parent of a child with special needs you have to develop a very thick skin and learn to take everything you are told by people outside of your situation with a hefty pinch of salt.  After all, who knows your child better than you yourself?  Each child who has Down's Syndrome is very different from the other - the tendency for some professionals to generalise and lump them all into the same sterotype is high.  There is the dreaded phrase 'They do this....' They?  Who?  Each child with Down's Syndrome has their own personality, talents and rate of development, just the same as any other 'normal' child. It's something everyone has to learn to accept, including the professionals.

Welcome!

I've had this blog in mind for quite a while now as I felt there was a need for a friendly and experienced source of support and information for the parents of children with Down's Syndrome. My own daughter is 22 years old and over the years I have been fairly lucky with the support I have received, but there were gaping holes in the information on hand which I have had to fill through either trial and error, intense research, pure luck or being just stroppy enough to get the answers I was looking for.

I don't claim to be an expert - if you notice any errors in the information I post here, please feel free to get in touch and put me straight! I have, however, seen my daughter through the mainstream school system from infant to secondary and even on to college. I have also worked as a pre-school practitioner for 7 years (complete with training in pre-school practice, special needs and as a SENCO) and a further 7 years as an LSA (Learning Support Assistant) in a mainstream infant school working on a one-to-one basis with children with Downs as well as other special needs children.

I hope to keep this blog very much as a continuing work in progress, posting regularly about various subjects connected to the bringing up and educating of a child with Downs. I will try to keep the headings and labels as simple as possible in order for a topic to be found quickly and easily. For instance, anything to do with dentistry, teeth, special needs dentists etc. to be under the label 'teeth' - the last thing any harried parent needs is to be messing around unnecessarily searching for what they want to know!

If there is anything specific you would like to find out about, again get in touch - if I don't know, I can attempt to point you in the right direction. If there is anything you feel should be shared - get in touch!

I will put relevant links in the sidebar, i.e. the DSA - I cannot recommend the Down's Syndrome Association highly enough for their informed and positive approach, as well as having fantastically well-qualified advisors on the end of the phone who are willing to help you with any query you may have. Joining the DSA also entitles you to receiving their newsletter which is informative and upbeat.

Thank you for visiting - I hope you will be back another day!