JUST ANOTHER NAUGHTY CHILD?

This month is SPD (Sensory Processing Disorder) awareness month.

At some point in our lives we have probably been into a supermarket for eg. and heard a child screaming. We may have been on public transport and aware that a child is constantly fidgeting and trying to get up and down off it’s seat.  We have probably thought to ourselves that the child is being naughty, needs a good telling off and that the parents should exercise more disipline.  What we have probably never thought of is that the child may have some form of sensory processing disorder.

Sensory Processing Disorder or SPD is something that to be honest I was not really aware of that much myself until quite recently.  This may seem surprising given the fact that it has been clear for some time that Jessica has ‘sensory issues’ but nothing had ever been explained in much detail.  Jess had had no formal assessment of her SPD infact I can’t recall anyone actually using the term.

Back in the Summer the Grandparent Support Group SNUG (Special Needs United Grandparents) held a local meeting & coffee morning and we were treated to a talk by an independent Occupational Therapist who was also an Advanced Practitioner in SPD.

This talk was a definite eye opener.  At times some of the things that were being described were so accurate as to how Jessica behaved it was uncanny.  Afterwards I had so many questions I wanted to ask, along with the other Grandparents in attendance.

I couldn’t wait to tell my Daughter about this meeting and passed over the lady’s details.  I received a telephone call from  her later to say that she had arranged for a home visit and an assessment of Jessica’s behaviour.

The assessment consisted of not just a home visit but also forms for Jessica’s nursery school to fill in so that an overall picture could be obtained of Jessica’s behaviour both at home and in nursery.  

The report that came back contained the following information:

Sensory processing disorder is a condition that exists when sensory signals don’t get organised into appropriate responses.  Sensory processing disorder can affect people in one sense or in multi senses.  Jessica displays signs of sensory processing disorder in a number of her sensory systems; the proprioceptive sense, the vestibular sense, the tactile sense and the auditory sense.

The Proprioceptive sense.  If we are sitting down for eg. we don’t have to consciously think of how to place our feet, or sit in the chair, to keep ourselves from falling over.  This is proprioception.  Receptors from our muscles and joints give us this information automatically.  When we first learn how to drive a car, we may find ourselves having to look to check our feet are on the right pedals and to check with our eyes that we change into the right gear, but once we have been driving for a while then all of this becomes automatic.  Our brain has learnt what to expect our body to be doing whilst driving. we don’t have to keep visually checking each move.  Jess is under responsive to proprioceptive input which means that she can have difficulty grading movement.  A child such as Jess often seeks opportunities to gain proprioceptive input during their play and daily activities by constant fidgeting or being on the go all of the time.

The vestibular Sense:  The vestibular system is all to do with movement and balance it helps us to control our balance and co-ordinate movement.  It is said that the vestibular system is the first sensory system to fully develop by 12-14 weeks of gestation.  Jessica is also under responsive in the vestibular sense.  Again, the underdevelopment of this sense shows itself by a child wanting constant movement and also craving intense movement experiences.

The Tactile Sense as the name implies refers to touch and the information being sent to the brain from the tiny receptors in our skin.  This information can relate to temperature, pain, shape, size and a lot more.  Children with an under-responsive Tactile sense may have a higher pain threshold amongst other things, whilst those who have are over responsive may find certain clothing fabrics, garment tags etc., quite a painful experience.

So now we knew what some of these things meant, how could we help to limit the impact it had on Jessica’s life and well being? 

As well as various equipment which would help it was also suggested that Jessica would benefit from a sensory diet.  This has nothing at all to do with her eating but is basically a list of activities to be used daily, designed around her which can help with her sensory processing needs. 

Play activities to provide proprioceptive input can include jumping, crawling under couch cushions, playing with weighted balls. Heavy marching and/or wearing a weighted back pack as she walks around.  Pushing and pulling open heavy doors when out.  Short burst of jumping, squeezes and self imposed body hugs.

Play activities to provide vestibular input:  Sitting on a rocking chair, sitting on a gym ball.  Playing on slides, swings, seesaws, ladders.

Play activities to provide combined tactile and proprioceptive input:  Clapping games whilst adult recites rhymes, swimming and pool activities, ball activities such a bowling or catch.

Jessica’s parents wasted no time in putting some of these things into practice and her new school were also given a copy of the report and sensory diet so that they could also implement some of the things suggested.

Children  with SPD can have a difficult time making sense of the world.  Some children are sensitive to certain noises, such as the loud public address system in a supermarket or the constant bleeping of the tills. Such noises can cause them to become distressed and afraid. Children with SPD are often not able to sit still for any length of time, their bodies crave movement to be able to judge their surroundings and their place in those surroundings. These things are not in the child’s control, they are not being naughty.

Here is a video that was made for children explaining about SPD but I think it is good for adults too.  If you have children of your own then why not watch it together? 

SPD VIDEO

The more we talk about Sensory Processing Disorder and begin to understand it then children like my Granddaughter will have a better chance of being understood and a better future once they reach adulthood.

As was quoted at our meeting

 "SEE BEHAVIOUR? – THINK SENSORY!"

AWARENESS DAYS - AM I BOTHERED?

I saw a list recently of all the awareness days scheduled for October this year.  October seems to be quite a busy month and yet I’m sure if you were to look at other months they too would probably be listing various charities, organisations etc that are claiming a particular date to highlight their cause.

Setting aside certain dates for various causes or events is not a new phenomenon but certainly with the increase of social media sites and more people using the Internet the awareness day is becoming ever more popular.  There is a growing trend now for more obscure sounding topics to be given the ‘awareness day’ treatment for example amongst the more well known topics in October there is Global Handwashing Day, King Harold Day and one I shall definitely be looking into – Chocolate Week!

The website that supplied me with this information positively encourages people to start up their own Awareness Day saying they are easy and fun to do.

Bearing all of this in mind then are we in danger of making such days a bit of a joke?  
Are we detracting from the original more serious purpose of educating people about topics and issues of importance?  Issues they would probably not have had much knowledge about before unless it had affected their lives in some way.  

This also raises another question.  How many people actually open up the links they get on their newsfeeds and read the information?  Do people just groan at yet another one and press the share button because that seems to be the right thing to do?

Unless the link is actually opened up and read then the message is lost, no-one has been made aware of whatever the organisation/group wanted to share, all that has been shared is a web address.  It’s a bit like forwarding an empty envelope.

You would be forgiven then, if you have got this far, for thinking that I may be a bit cynical about Awareness Days and the like.  
You would be wrong.  

I believe in sharing knowledge.  It is said that a little knowledge can be a dangerous thing and in some cases that is true, but when it comes to making people aware of something that they had no or little knowledge of beforehand then it can do a lot of good.  Attitudes can be changed, funding can be asked for and important research carried out.  

Not every topic is going to be serious or life changing to someone but who knows? unless we read the message we will never know.

If even just a few people pay more attention to their hand washing routine after reading the article under the heading Global Handwashing Day, then an outbreak of dysentery or diarrhoea may be avoided and yes a life may even be saved and by learning more about the subject and sharing with others on World Mental Health Day we could help change attitudes towards this little spoken about subject for the better.  

The reason for creating this SWAN Songs blog was to make more people aware.  To make them aware of the difficulties that can arise when there is a child with additional needs in the family.  To make them aware that not every child is given a diagnosis.  So yes, when it comes to raising awareness, whether it be via a blog, or a designated day, then I am most definitely bothered..

A NEW GROUP FOR GRANDPARENTS

As a Grandparent I know first hand the feelings and emotions that you get upon hearing that your Grandchild has been born with different needs/disability.  I know how hard this can be to discuss with other family members, I know how difficult it can be for your friends to fully understand your concerns. I also know how comforting it can be to talk to others in similar situations who understand the emotional roller coaster that you are on.  I understand how empowering it is to be able to find out information and to be able to share that with others.  

After speaking to a few Grandparents one morning at my Granddaughters SN Nursery I realised how good it was to be able to talk to others who had the same feelings as myself.  It also became apparent that what Grandparents often want is more information so that they can understand more about their Grandchild’s needs and therefore be able to be of more help.  I wanted a local group where I could meet up with other Grandparents like myself to be able to share information, listen to others and also within that group chance to listen to professionals and charity representatives so that I could find out what was out there which might be of help to my family. 

I could not find anything at the time therefore after much discussion and help from others, SNUG (Special Needs United Grandparents) was born. 

Having the idea was the easy part but without the help of others who believed that such a group was needed it would never have got off the ground.  In the early days we had difficulty finding a venue that did not require us to have insurance. 

I initially outlined the basics of my idea for such a group at a networking meeting organised by Staffordshire S.E.N.D. (Formerly Parent Partnership).  From that meeting others got in touch with me offering help and in particular a lovely lady called Tracy from Skillshare. Tracy has been fantastic in helping us to have a venue for our meetings (a room in the offices of  Staffordshire S.E.N.D) and also in getting information leaflets printed about SNUG. She has also been able to organise very informative guest speakers.

Initially I was concentrating upon just a local group but then decided I wanted to provide a platform for all Grandparents of SN children to be able to share information and experiences no matter where they lived.  The SNUG Facebook Group was formed.  Now it doesn't matter where you live, by joining the Facebook Group you can be sure of a warm welcome from other Grandparents just like you. 


So to summarize, the group is currently in two parts and to become part of it is simple:

FIND US ON FACEBOOK

The closed Facebook Group allows Grandparents of SN children worldwide to be able to connect with each other. To join you need to be logged into Facebook then search for SNUG (Special Needs United Grandparents) and click join.  Your join request will then be dealt with asap.  It is a closed group to offer a certain amount of privacy.

MEETING GROUP (CURRENTLY IN STAFFORD, STAFFORDSHIRE,UK)

The Stafford Group is for Grandparents who live in Staffordshire who like to meet up during term time for tea/coffee and a chat.  Sometimes we have informative talks from professionals or other organisations.  To join this group please contact me via our e-mail address snugstaffs@gmail.com and I will add you to our mailing list to be kept informed of all meetings as soon as they are arranged.  Although e-mail is preferred so as to keep costs down to a minimum you can also telephone 07471178128

You can belong to both the Facebook Group and local group if you wish.

It would be lovely to see the group grow to an extent where local meet ups can be organised by members in other areas.  Facebook is brilliant for being able to share with people worldwide but it is also nice to be able to chat to someone face to face over tea and cake!
If you are interested in organising a SNUG meeting in your local area then please contact me (Anne) and I will be happy to help or advise if I can.

One of our Facebook members came up with the slogan “because Grandparents care too” and I think this is very fitting because not only do Grandparents of special needs grandchildren care in the caring sense of the word but now many more Grandparents also share in the physical day to day care.

SPREAD THE WORD 

Help us reach as many Grandparents of special needs grandchildren as possible by talking about this group, sharing this blog and passing on our contact details. 

Anyone can follow us on Twitter @SNUGnews     The twitter account is a good way to find out more information about the group.

Information leaflets are available upon request or for any further information contact us via one of the methods below:-

E-MAIL – PREFERRED   snugstaffs@gmail.com

Tel: 07471178128

or send us a Tweet 
 
 
 
 

THE INVISIBLE CHILD

     

     Once upon a time there lived a couple who had a young child.  This child was the apple of their eye, clever and bright and they wished they could have another so that the child could have a baby Brother or Sister.  Imagine their joy when they found out that their wish had come true.

The baby was born a healthy weight and with no complications.  The family were so excited Mother and baby were soon allowed home.

      It was not long after that that the Mother became a little concerned.  The baby seemed happy enough, but did not want it’s milk as babies should.  The Mother questioned this but was told it was nothing to worry about.  As time went on the Mother’s concerns grew.  The baby was losing weight, it was still not taking much milk.  There was something else too, something she couldn’t really describe, the baby just did not seem right.  It was not really engaging with people or surroundings, yet the baby seemed content and even managed a smile now, but that smile appeared mostly when she was looking at lights.  Oh how that baby loved lights, infact that seemed to be the only thing at times that triggered any response.  Once again the Mother questioned this but was told that the baby probably just had reflux which would explain the loss of weight and feeding issues.  They said she was just being over anxious.

     More weeks went by and the baby’s weight had dropped off the scale.  She was no longer the plump little bundle she had been at birth but now looked frail and skinny.  The Mother noticed that her precious baby was not doing the things that she should be doing, she was hardly feeding, was losing weight and yet in a strange way still seemed content.  Something was wrong. Very wrong.

     At the hospital the Mother sat holding her baby in her arms, waiting.  She had been waiting to see a consultant for a long time now but she did not care.  She wanted tests done, she wanted answers.  Finally they saw her and again they tried to fob her off, but this woman was made of strong stuff and she stood her ground.  She knew that she had to be the voice for this child as no-one else seemed to be able to see her like she could (she did not know it then but she would be shouting up for her child for the rest of her life).

     Tests were done, Downs Syndrome, Cystic Fibrosis and many more.  All came back negative.  The Mother wanted more, a brain scan perhaps?  The hospital said she should stop worrying and go home.

     A week later the baby had an MRI scan, sorted out privately by the couple who by now had given up trying to convince the hospital. 

     NOTHING, absolutely NOTHING could have prepared them for the results that came back.  Their precious child had been born with an underdeveloped brain.  The reasons for this were not known.  The full extent of the damage would not become clear until the child got older but there was a chance she would never be able to sit up, walk or even talk.  

     That families world fell apart that day.

     Once they had gotten over the awful news the family set about trying to get the very best help and support for the child they loved so very much.  Surely now they had the MRI results things would be easier?  It was not always to be.  Without a recognised diagnosis (a label people could identify with) the child once again became almost invisible.  Getting help often required filling in forms and the forms wanted a diagnosis, an underdeveloped brain was a symptom not a cause.  People would often ask what was wrong with the child.  The Mother would try and explain saying no-one really knew but she could see them looking at her disbelieving.  How could anyone not have a diagnosis in this day and age?  Surely the Mother should have the baby tested?  The Mother felt alone and afraid.

     Good fortune was about to fall at last on this special family.  One day the Mother came across a support group called SWAN UK (SWAN stood for Syndrome Without A Name).  She learnt that there were lots of others out there who were born without an official diagnosis.  She joined the group and at last she was no longer alone.  Her child was no longer invisible to everyone, there were others who could see and understand.

THE END  BEGINNING

This is not a fairy story it is based on real life situations

It is estimated that 30-50% of children with learning disabilities and 50% of children in contact with NHS Regional Genetics Centres may never get a diagnosis to explain the cause of their difficulties. Life for families of these children is extremely isolating – they have no idea if their child will ever walk, talk, what their life expectancy might be or if future children will be affected. Many of these families feel they don’t ‘fit in’ with other parents of diagnosed disabled children so don’t access wider support groups. SWAN UK is a project designed specifically to meet the needs of these families. Building on the support previously offered by the charity ‘Syndromes Without A Name’ (SWAN), the SWAN UK community offers families the opportunity for mutual support and information sharing.

On Friday 24^th April it will be #UNDIAGNOSED CHILDRENS DAY.  There are many ways you can support this day. 

Organise or attend a fundraising event for #SWAN UK (SWAN FUNDRAISING PACK)

 MAKE A DONATION

Raise awareness on Social media

Most of all remember that just because a child is #undiagnosed they are NOT INVISIBLE

THIS IS PART OF A BLOG HOP 

SEE BELOW

  

LETTING GO

Hello again, thank you for joining me, it’s been a while:-

I wrote a post about change not so long ago, well now for some more.   Some good and some not so good.  All in some way contributing to me not really having much thought for writing at the time, but here I am again so let me start at the beginning, which according to Maria in the Sound of Music “is a very good place to start”!

The first change to the normal family routine was definitely a very good one.  It was the birth of my third Granddaughter Beth.  My youngest Daughter Sarah and her Husband Paul’s first child and a cousin for Natalie and Jess.  Beth arrived safely into the world on the 8th November, a very timely arrival as it is a Birthday she now shares with my Hubby, her Granddad Rob.  With Natalie and Jess growing up it is nice to hold a baby again, although she is also growing up fast and will not remain a baby for long.  Jess was curious when Beth arrived and got very excited when Beth cried!  She seems naturally very gentle with her which is lovely.  Natalie of course was over the moon at being able to hold a baby again and gives her lots of fuss.

The next change was one I bought on myself after much soul searching.  I recently decided to leave my dinner time job. I have been working as a dinner lady at Jess’s SN Nursery since August last year.  I have been doing voluntary work there since Jess started full time, mainly helping in the hydro pool, so when the chance of a paid job came up I applied straight away and was lucky enough to get one of the two positions on offer.  I worked just two hours per day 12.00-2.00, setting up for the group which I was assigned to, helping the children in that group to eat their lunch and clearing away afterwards.  It was hard work at times, but I have loved every minute.  So why leave?  

The main reason I suppose was that Rob took early retirement end of last year (more change) and I wanted to be able to free up some of my time so that we can have days together if we want to.   

I left just as we broke up for Easter and I was overwhelmed by the cards and gifts that I received from both Staff and children.  We were all getting together after lunch to say goodbye to one another as we were finishing early and I was called out of the circle and the children were told that I was leaving as a Dinner Lady and I was handed flowers and gifts.  That made me tearful enough but then a child from each group was brought forward with a card that their group had made for me and I had a huge lump in my throat and found it very difficult to say anything.  Later in the car on the way home I sobbed for most of the journey and then again when I got home and looked more closely at what I had been given and what had been written inside the cards.  I have said I would still help out in the hydro pool when needed until July so I am not severing all ties just yet but I shall miss the banter I used to have with the children and those that I worked with.

The next changes on the horizon are going to be the hardest for me.  Jess will be leaving her nursery end July and will be starting at a new SN School in September.  It will not be practical for me to take her as I do some days at the moment, as the school is in the opposite direction so she will be going on special transport with escorts.  Although on the days that her Mum is at work I shall still  be waiting at her home to receive her in the afternoon, I can’t help but feel a certain amount of sadness and trepidation. 

It is important that Jess does this.  She has to learn to adapt to change, she has to learn to be able to adapt to new situations and new people and I am sure that she will settle very well.  I, on the other hand am finding it very hard to even think about it at the moment.  I gave up my job in Estate Agency 3.1/2 years ago  when jess was just over a year old, so that I could help with her care.  It’s hard to believe that she could not even sit up unaided then and look at her now.  She runs, climbs and generally does not stop.  We have been through a lot together Jess and I.  It’s been a tough journey at times both physically and mentally but it’s been one of the most rewarding times of my life.  Of course I shall still be helping out with both Jess and Natalie especially in the school holidays, it’s not as if everything is suddenly coming to an end, but it does feel like the end of an era. 


To quote yet another song  LET IT GO……