Friday, 15 February 2013

The Day you thought your World had Ended (Handling the Diagnosis),  Dyslexia Dublin CETC ©2013

The initial moments of hearing a report or diagnosis or indeed as in my case, my son’s Headmaster our hearts sink…we question why and how…you are told a multitude of reasons why… but none of this helps at this early stage.
We, at this very point, feel alone and with little support
We need to slow it all down, take five and then start to try and make sense of it all…turning to friends is ok for personal support but if they are not in your position they will be of little help.
If anything, they may suffocate you with ideas and good intent.  They will also say that the information given to you was wrong as there is nothing wrong with your child…but you know that is far from the truth.  You have had your suspicions for quite some time and, after all, that’s what drives us to seek advice or diagnosis.  Don’t blame yourself… “You know how to parent!”.  We were told several things about delivery problems, stress in pregnancy, breast feeding… none of this has been proven and certainly in my family line we have siblings and children with all manner of deliveries, some bottle fed and others breast fed and most went through near perfect pregnancies.
Once you have taken stock of the situation it is time to bring things into focus.  Make a reflective diary as far back as you can for your son/daughter or self, make notes of certain things that stand out and vary from children/adults of a similar age.  Talk to your school when you have your list and of course seek professional advice.
Have a plan in your mind but don’t let your plan frustrate you and make sure it’s workable…time is very important for intervention and time is often something we have little of. We found out when my son was five and now he has moved on and is in a much better place (thirteen and in secondary school).
You will find, or are finding, it very tough at times having a specific needs child/adult in the house and yes managing that at times takes you to your limits, but you cope and will continue to cope because love conquers everything, whilst the emotions of the moment cannot always fix the problem.
I have avoided till now the use of the word ‘special needs’ as my preference is ‘specific needs’. People will tag your child with this but that is just the way of the world… don’t take it personally as it is often meant with genuine concern.
Always look at the positives in your child even though he/she has, or is about to be diagnosed with a specific need.  He/she is still your child and a person in their own right.
You will be offered lots of opinions… listen only to the ones that make sense and when you get the diagnosis you will no doubt look at it and deal with it in a different way to me or the next person and that is not a problem.
Try not to overwhelm yourself with information, go at a sensible pace.
Use social network sites, published material (books, magazines) and Google…try and make sure that when you speak to the SEN/SNA…OT… Ed. Psych, that they are happy and aware of the particular needs of your child (especially for dyspraxia). 
If you want to research the diagnoses keep a structure to it.  Knowledge of a subject is a very powerful tool and it will ensure that people in authority will listen to you and not talk down or try to brow beat the way they might with a person that has no background information.   Also, keep emotions out of this if possible, as time with schools or Ed Psych and OT’s is precious.
Make sure you keep a good filing system as it will be invaluable at some point… keep all the information ready to hand, you never know when that all important call may come through. Keep a note of all questions for any professional visits, as not all children with specific learning needs present with the same symptoms.
It is essential that you allow yourself some space… it will allow you to think much clearer and you need to be fresh for the next phase.  You will get down and your network around you will too and that is okay and it is also okay to let others know how you feel when that happens, but try not to let it dictate to the point where you might push those close away.
Let others know how they can help and remember, most offers of help are given with good intent.
Often you need support in other ways and it is important to ask as if you don’t ask how will others know?
Look at modifying the way day-to-day events happen and try and be flexible, but dependable.  One thing all children/adults with specific needs cry out for is the feeling of being safe and in a stable environment.
Look around at your local resource, there could be help at hand (local health clinics etc.).
I cannot stress how important it is to include all of the children in the family unit…this will prevent them from feeling  pushed out and isolated.  Let them take some ownership in planning tasks aimed at helping their sibling.  It’s worth remembering that others feel stress too.
You may indeed be in a second relationship and don’t know how to fit in to the new unit and one that includes a child with learning needs…this might be a first for you.  A good start is to read as much as you can on the learning need and time your opportunity to talk to your new partner about your concerns and indeed, if needs be, fears.
Be careful how you introduce new potential family members and make them fully aware of the learning need…friction is one to avoid as it lasts longer than you may think.
Books on the subject (ie. My Friend Has Dyspraxia) are a great way of sitting down with the family and getting to understand what this means and how to move forward.
The one thing you must learn to do is adjust to the new situation and never make obvious changes where the child with learning needs is concerned, but be there in a supporting role.  From experience, I can say we don’t want to feel different and we have qualities that are greater in certain areas than our peers.  It is very important to refer to this and indeed mention to your child that we all bring different gifts to life’s party.
It is very important for your unit to remain the status quo as it probably was before the diagnosis.  Nothing has changed, with the exception of this paper and it has possibly confirmed what you have always suspected…the positive is that it allows you to structure things and get the help you require. Your family unit must keep as near to normality as possible, as change often brings blame.
If it’s hard for you to get out, invite friends and family over to you…it’s often a good idea to have slightly younger children around as children with learning needs are often slightly below their chronological age in regard to maturity in some, not all, areas.
If you are struggling to handle all the paperwork (eg. DCA, etc.), enrol a friend in this task… two heads are better than one.  It’s okay to enlist others and it will make them feel good… who knows they might even turn up with a packet of your favourite biscuits!
As many of you know I have dyspraxia and I can say I have lived a good life.  There are things I would have changed and that is one of the things that spurs me on to help others in my work.  I hope you have found this article useful and please feel free to comment…as with all my posts this is for guidance only and you should always seek the advice of professionals.
I have attached a podcast of a recent interview I gave on a disability radio show…hope you enjoy….Toby Lee Dyslexia Dublin CETC

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