Tag: special needs

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A Christmas Tale – 26 Gorgeous Children – A Party – Special Needs

Saturday was a revelation.  A group of parents run a special needs club at the weekends, with the support of a school and the grateful advice and help from the National Autistic Society.

We borrow a school premises and open up to children with ANY type of disability up to the age of 14 in Aberdeen –  not just those on the autistic spectrum.   We also accept siblings, as there was nowhere that any of us could go with all our children to play, or be involved in activity sessions.

The mix of excitement, christmas coming, a certain man in a red suit, and lots of sugary chocolate is not always a recipe for success, so I met the day with a certain feeling of elation and caution for how it might proceed.   We are all volunteers and we don’t get paid.  I think  it is important to mention that up front, as there is sometimes confusion over how we all fit in to the structure.

There was a lot of excitement last week because of the party, and arrangements had been in place for quite a while.  We received a lovely offer from Kids Bee Happy who provide parties using sand art to come along, which I eagerly accepted.  The lovely Lorraine from Aberdeen arrived with a couple of tables and was soon in constant demand.

Be very aware, that this is no mean feat to undertake for anyone, let alone a  fledgling business.  It takes a confident entertainer to enter a room with such a large proportion of special needs children.  If your products don’t cut the mustard, you will hear about it very quickly from them.

The sand art had generated a buzz of expectation, as it is a new childrens activity, both to me, and to the other parents from the group.  We were all keen to see how it worked – and how our children would respond to it.

It was fabulous.  Children who usually have little or no interest in sitting still for long periods of time were concentrating and working on the projects.   The tables are set up as a unit which contains 6 bowls of different coloured sand.  All in all, there were 12 colours of sand that the children could choose from.

The children (and many of the adults) chose from the racks of pictures that they would decorate with sand.   This is a very hands on and engrossing task to get to grips with.    With lots of pictures to choose from, age groups from 2.5 – 45 were kept amused.   I even noticed one granny having lots of fun.

  To make the sand art, using a nail, or a little stick, the artist peels each section back on the picture one at a time.  That opens up a section which is sticky.  Little fingers then choose a colour of sand and carefully spoon it onto the picture.  When the picture is shaken, the sand remains on the picture for a fabulous colour effect.

It can take anything from about half an hour to 45 minutes to complete a whole picture.

Our children did pieces of their pictures at a time, then laid their pictures aside and came back to them after eating, or running about.  The fact that they could dip in and out throughout the party make it the perfect activity.   Just watching the concentration on their faces was amazing.

Some children did several pictures, and when they were finished making their creations, the pictures were laminated to take home as souveniers.

The finished and laminated pieces of art have a little hanging tab at the top.  I think they would be perfect to add a little calendar to the bottom and give to relatives and friends as presents.

Lorraine liked this santa picture, as the child who did it used all different colours of sand for the background.

This is a new business for Lorraine in Aberdeen, and she was constantly in demand from parents, who were asking her for cards for future childrens parties and school functions.

Everyone agreed that the sand art was a lovely and welcome surprise which would keep children entertained again and again and again.   We really all recommend it for any function, school fete or party.

For such a large group of special needs children – they did themselves proud.

 The concentration levels and interest was amazing, and many parents were delighted to see their children enjoying such a time consuming and high concentration requiring activity.

Poor Lorraine was inundated and we over-ran terribly due to how much everyone was enjoying it.  She certainly had to work very hard.

We also provided a bouncy castle, plenty of food and the local magician, Garry Seagraves Magic.

 I had seen Garry work while I was in the oil industry at functions, and now, as a parent, I have seen several of his magic shows that are tailored towards children.   He also had experience of giving shows to special needs children – and with the trademark leather trousers, long hair and trusty rabbit Basil, the children all seem to gravitate towards him.

He was the natural choice for our kids.  I don’t think there are many parents of primary age children who have not seen one of his shows as he is quite the celebrity to local under 12’s.

The red man arrived to hand out some presents, and photographer duties were sadly lacking as I managed to miss getting a picture of him – my excuse is that we had to sort out our pressie mishaps when some labels came adrift.

 All in all, it was a successful party.  We over-ran and we owe a great deal of thanks to all the entertainers, volunteers, helpers and even the school janitor who never, ever complains about what we request of him for the club.  He was not due to be in Aberdeen at the weekend and came all the way back  to open up for us when our weekend cover janitor could not make it in.  That’s dedication.

Disclaimer:  The parents of all children included in this post have given permission for their images to be used.  Sand Art was provided by Kids Bee Happy, and was a most welcome addition to our party.  It is one that we will definitely repeat in the future.

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Things I think ALL Parents should know about Foetal Alcohol & ADHD Children.

This is a cup of coffee and a biscuit type post.

Have you ever wondered what behaviour characteristics are common to a lot of disabilities?   Many problems, such as Foetal Alcohol and Attachment Disorder, Pervasive Development Disorders  and Language Disorders which are common in Adoption have more pronounced issues along the same lines, but these are things that we should all keep in mind when we are dealing with vulnerable and sensitive children.

You need  remember that not all vulnerable children act like vulnerable children and may act aggressively.   It is our job as adults, not to judge every child by the impossible standards set by children who are not within the special needs arena.

Once a child attends school, the issues and problems that they face increase by startling amounts.   Suddenly they are faced with the sector of society that many of them want nothing to do with in life, but are forced into inclusion.  There are some children, and some situations where inclusion works, but the extent of help within our school systems for these children is just not good enough in  many cases.

If we add the pressure of social acceptance and the pressures put upon them by teachers who want them to meet academic targets, we can see that it is easy to ask too much of children who are not mature enough to deal with it.

Behaviours that can be seen regularly with many of these disabilities are spread across the spectrum, and one or two of these put together is not going to be recognised as a disability.   When we are seeing lots of them together, warning signals should be sounding in parents, teachers and friends heads to get help for them.

You don’t have to listen to me to tell you how many children are being failed by our education system due to costs, you can ask any teacher on a day off with a dry white wine in his/her  hand.

I have heard people on social media, ranging from the ridiculous to the sublime and making all sorts of accusations about the people who say they should not be drinking alcohol.   Well, l can tell you, that life with a foetal alcohol child can be sheer hell for everyone concerned.

Remember this post when you think about picking up a glass of wine once you know you are pregnant.   The only thing the medical profession can agree on is that they DON’T know how much alcohol might affect any child.   From that, I read that it could be one glass or it could be 10 glasses a day every day.  All children and their tolerances are different.

Contrary to common belief, most foetal alcohol children are probably not born to mothers of raging alcoholics.   Most are likely born to women who think that  a few glasses of wine regularly won’t do any harm.    Sadly, those women tend not to admit having the glasses of wine when they are pregnant and they underestimate it to doctors.    Foetal Alcohol Effect as a diagnosis, I suspect is one of the least diagnosed conditions that there are out there.  I can see that most of them are diagnosed as having other conditions that are much more socially acceptable to talk about.

Nobody should hide behind that.  Every mother knows if she drank alcohol when she was pregnant.  If your older children have many of these symptoms, then think seriously about what you are trying to get in place for your children.  Pretending it is ADHD when it is Foetal Alcohol might not get them the help they need, and if they have both conditions, then they are really going to struggle. And don’t read into this that every ADHD diagnosed child should really be FAE because that would be very very wrong.

Being diagnosed as foetal alcohol effect – which does not have the facial symptoms – is not socially acceptable though, is it?

Who is going to admit it to a doctor, and how many doctors are going to bring that up with a parent?  It is the responsibility of the parent to swallow what they did, accept it and get their children the help that they need – before it is too late.  This is the list that applies to a certain lovely little lad that I know with foetal alcohol effect.   There may be more symptoms, but I can only tell you what I know about.

On the surface, unlike the children with Full Foetal Alcohol Syndrome who are much more obviously affected, with more profound special needs, the foetal alcohol effect children look unaffected.  Many of them seen to have good speech patterns, they tend to learn to read and write easily although they often struggle with the comprehension, and they tend to be able to make their daily needs perfectly well-known.

  • ADHD is a common side effect of Foetal Alcohol.  They are not the same thing.
  • Very young children with FAE are very high needs and over demanding. They are often the kind of children that even at the age of 3 +, you cannot leave them in a room long enough to have a pee.
  • Problems with school work and learning academic work, tending to be struggling understanding concepts.
  • Difficulty making sense of some commands that are given.
  • Speech and language problem at times.
  • Difficulty controlling impulses.  Rather like not being able to put the brakes on something and charging ahead without thinking.
  • Short term memory issues.  Learns concepts and then forget them again.
  • Under developed conscience.  Does not see how what they do might have an effect afterwards.
  • Doesn’t see the point of having to adhere to rules.
  • Struggles to deal with feelings of anger or inadequacy and may react with rage.
  • Any anger from anyone else may mean they react the same way.
  • Easily influenced and usually keen to please people which makes them very vulnerable.
  • Extreme reactions to being told no, not today, not getting their own way.   In most cases it is far and above the reactions of non foetal alcohol children.  Even in mild cases, it could show as being overly stubborn.
  • Low self confidence and high drive to be accepted and may take the blame for things to be popular.  May also struggle to tell the truth and be used as a scapegoat by other children as their short-term memory makes them forget the sequence of events, and nobody believes they can’t remember something that happened 30 minutes ago.
  • Teachers lose patience with them as they learn something, then a few weeks later may forget it.
  • They often turn into perceived bullies as other children often taunt them when they learn the weakness, and the Foetal Alcohol child then gives the extreme reaction to the situation and gets punished instead of helped.  The other children know that by the time they get back to class, the FAE child will struggle to get the sequence of events right.
I have recently been made aware of one other characteristics that affect many children and that is the one on sugar cravings.  I know one foetal alcohol child who very much has that, and he will steal to satisfy his cravings for sugar.  It was the first time that I had heard that it was a secondary effect of  FAE.
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I had to read it in a book.  Thank you Brenda McCreight for your book on Recognizing and Managing Children with Fetal Alcohol Syndrome / Fetal Alcohol Effects – A Guidebook.
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How enlightening was it to actually know that it was a behaviour that is quite common with the condition.
I don’t doubt that this is hard reading for some of you, and others may feel some guilt at what the possibilities are for your children if you drink alcohol.  I don’t have those hang ups as I did not give birth to my children, but if you suspect that is what your child, or children have got, swallow your pride, see it through and get them the help they need.
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And if you are pregnant and drinking alcohol, then stop now.  If there is any damage done already, at least it will stop when you do.   I really don’t care if you think I am the overbearing Pregnancy Police, because I live with the effect of someone else’s drinking and how it devastates lives, and I don’t want it to happen to your children.
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I will leave you with the words from @melaina25 from Transatlantic Blonde who  hit it on the head in my last post about FAE when she said that there has never been a foetal alcohol baby born to a mother who didn’t drink alcohol.
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I Have Sent My Child to Stay with Strangers.

For Thursday 7th July 2011, we were offered our first overnight respite from middlers non stop antics.  It was a blessing in disguise, however you describe it. 

  • This post may lose me readers. 
  • This post may also make someone else feel not so alone.

Lets take a day in the life of Scottish Mum and her family.  

It’s fair to say that middler has been struggling with his brothers since the start of the summer holidays (a whole three school days).  Having spent nearly 8 months under mums feet , he considers me as his sole possession.   He cannot read, he cannot write, but he can talk and he is highly mobile.  We are in the caravan, which is always a challenge, but has usually been good for him.

On Wednesday, woken up by a sharp prod in my chest, I jumped up with a start, and banged my head on the cupboard above my head in the caravan.    Racing to get to middler first, I miss, and he takes off out the front door and heads for reception of the campsite to try and jump onboard the little ride on lawnmower.  

Reception staff are starting to get annoyed with any children going around to the reception to play, and I don’t want to be thrown off the site.  I try and catch up with him.  The old wardens used to know him, and kept a watchful eye out for him, but the new ones are more rule orientated –  although still very nice. 

He dances around the lawnmower  and starts to shout and swear at me – telling me I am a “fucking bitch”.   I finally manage to catch him, and on the way back to the van, my shins get a few swift kicks.  My legs start to feel numb and the pain brings tears to my eyes.  

Getting him back to the van, I dodge his head twisting round to try and bite the back of my arms (you know the fleshy bit that hurts like hell if someone nips it – if you don’t know, you’ve had a sheltered life).  He’s nearly 10, and not far off my height, and the struggle to control him gets harder every year.  

He is in angry mode at being stopped from doing what he wants to do, and his voice gets louder and louder.   He slips my grasp and wakes littlest up by kicking him in the stomach.   I quicky give him his tablet and try to get him into a safe hold to stop him from kicking the furniture into bits.  Elder is woken up and comes down to take control of the legs that are swinging up and trying to knock my head off.    He manages to take off the trainers, and any kicks from now on will be much more pleasant. 

I know what kind of day I am in for.  It’s the kind of day we are in for often when his brothers are around, and I am the sole adult to look after them.   Littlest and elder can’t walk past him without a vicious kick numbing their legs, stomach, face, arms – in fact, anywhere he can reach them. 

It ends in Tesco for supper when he doesn’t get his own way, and begins to kick the shelves and products off of them.  I manage to get him on a wrist strap while elder holds his head to keep his mouth away from my face.   Getting embarassed now, littlest and elder decide to slope off to the side of the aisle and leave me to deal with it.  I am struggling to keep the intermittent headbutts away from my face, the alternating teeth off my hands and arms, and control the legs that are back kicking my shins as the hands grab chunks of my flesh and squeeze as tightly as they can.  He is in full meltdown in the middle of a flaming supermarket.

Unlike a toddler, you can’t leave a near 10 year old to rampage in a tantrum through a shop.  He would cause so much damage, that I’d have to work for a year to pay it off, and thats before Mr Plod is called for damage to property.     I decide there is nothing for it and I set myself down on the floor with him in a safe hold where we were.  We are in the main aisle in front of the checkouts.  I can’t move him forward or back, so I sit where we are.  I can’t hold him properly in the one person safe hold anymore as he is too strong, so he managed to get to my hands several times.   He is screaming, swearing,  headbutting and biting.   Staff begin to congregate around us, and elder and littlest get upset at people staring.  

Nobody bothers to ask if I need any help.  Why would they?  They think he’s just a spoiled brat and I’m a bad mother.  Nobody dares to ask me to move out of the front of the checkouts.  Thank goodness for that.  Maybe they think I’ll get up and headbutt them.

Such is my life.  Such is our life, mine, littlest and elder.  Middler keeps it in check for dad and strangers.  Then he waits until we are all alone and begins to pound us into what he thinks is his will.   No amount of bribery, corruption or sweetie offers will change the path of the outcome.  He resents his brothers, and he hates me when I have to split my time between them all.   He wants ALL the attention, ALL the time. 

In front of those who assess him, he cuddles me and tells them he loves me.   He saves his anger up and lets it out  for us when he feels safe.

He has a form of brain damage.  He looks normal, he walks normally, so therefore, to other people, he must be “normal”.  He can’t act like that, can he? 

  • I am exhausted, but its not physical. 
  • It’s mental. 
  • It’s never being able to rest, never being able to go to the toilet without getting someone to sit and hold him to make sure he doesn’t run off. 
  • It’s not being able to get a shower for five days if there is no other adult to keep him while I have the luxury of a spot of water to clean myself.  
  • It’s never being able to relax. 
  • It’s never knowing what he is going to get up to next.  
  • It’s never enjoying being his parent while his brothers are around. 
  • It’s never being good enough for him.
  • It’s knowing that he can keep that anger inside with other people but his anxieties are building up inside, and we get them later.
  • It’s knowing that he is vulnerable as much as he is strong.
  • It’s knowing his obsessions rule his life.
  • It’s knowing one of his obsessions is to always be in charge.
  • It’s knowing a major indicator of his issues is the extreme reaction to the word no.

At the offer of  our first ever respite, I drove home and back on Thursday at short notice.   A 112 mile round trip for a night of respite.    With littlest and elder, we saw him to the respite house.  They played hide and seek, and one of the carers for the night is also a helper at his new school for August.  His wobble on the way there disappeared and he instantly felt at home.  A young girl was on the floor playing.  We sat in the room he was going to sleep in, and after a coffee and a quick chat, I left him with strangers.

I walked to the car, choking back the tears – determined not to upset littlest and elder.   I didn’t want to leave him.  I knew for us, that I must.

  • I begin to feel free. 
  • I feel bad for feeling free.  
  • Littlest and elder feel free. 
  • They feel bad for feeling free. 

Not having him gives me a taste of what life is like with “neuro typical” children.   I mourn the lack of that life.

He will be back with us soon, and my heart fills with equal measures of happiness and dread.  I love him, and I will protect him until my dying breath, but I don’t like our life.  I don’t like how we have to live, I don’t like how littlest and elder have to live, and I don’t know if I can do it forever. 

When he is too big for me to control, he may have to go to residential somewhere.  I don’t want to do that to him as I know he would not cope with that.

Some days I don’t know how I will ever get to the end of it. 

I always do.  

Some days are better than others and for those days I am grateful.

He is not the cause of his anxieties, and he should not be like this.  He should be a happy, carefree “neuro typical” child.   He isn’t.   Every day, I wish that he could have the life that he desires.  It makes me so angry to see his struggles to live each day.

He wants to be “normal”.  

Having brothers only a year older, and a year younger than he is himself, means that he can never forget what he is, and what he cannot do.

So now you know. 

  • As a rule, we special needs mums with behaviourally challenged children don’t tell you exactly how it can be.
  • As a rule, you wouldn’t believe us if we did.
  • Our children don’t respond to textbook strategies.
  • We sit alone, thinking how awful we are as parents. 
  • Our confidence disappears as people treat us with condemnation rather than respect and help. 
  • We read, and read, and read, and read.   
  • We try to find a cure. 
  • We lose our old friends, and sometimes we are lucky enough to make new ones.
  • I am lucky.

When my son was 4, I thought I was the only person being beaten up by their child.  We were in the process of adopting him, and I was scared to say how bad it was in case they took him away.  I loved him, and I couldn’t see any harm come to him.  

I thought love was going to be enough.

Love is not enough.

  • Don’t judge a struggling mum.  
  • Give her a smile.  
  • Don’t dismiss every child who swears or kicks as bad.
  • Don’t think a family is coping, just because they seem to be.

I am grateful to the woman on the checkout we chose in Tesco on Wednesday. 

  • She smiled. 
  • She asked how we were.
  • She knew what I was doing as she has a grandchild who is being assesssed at the moment. 
  • She lifted my spirits. 

We came back to the caravan, we went for a walk and I tried to teach him how to skim stones on the lake.   

  • He comes back to see me today.
  • I can’t wait to see him. 
  • I have missed him.  
  • Littlest and elder have missed him.

Respite is good.