Monday, 27 April 2015

A Life-Changing Purchase

When you have a child with additional needs, you make all sorts of adjustments and adaptations to your life.  Eventually, these become so routine that they feel normal and you stop really noticing them...except at certain moments when you see or experience something poignant that can make you wish that life could be different.  Or perhaps when you experience a moment when you realise that without these adaptations, your child would be in danger - then you become aware of them once again.  This is particularly true when an adaptation that was working, malfunctions or breaks.  There is a moment when you wonder, what on earth do I do next?!  

Two weeks ago, part of Adam's highchair broke, meaning it was no longer safe for him to use.  While it may surprise you to know that he has still been sitting in a highchair at the age of four, this is because he's physically capable of sitting, but cognitively is unable to understand why he should sit.

When we had previously tried to stop using a highchair, mealtimes became an absolutely brutal battle that generally ended up with one or both of us in tears and Adam refusing to eat at all.  Helping Adam understand the need to sit requires a great deal of patience and an adult who can remain beside him encouraging him with speech and sign every few seconds.  In a professional environment this is fine because the teachers get their meal breaks at other times, but in a family environment when his mealtime is also our own, it becomes very stressful.  

The simple solution, keep him in a highchair, with a small seatbelt on it, had been perfect - he was absolutely content in the chair (on a good day, meltdowns not withstanding!) but that simple element of being strapped in, with a tray in front of him, prevented him easily getting out of the chair (if he really tried, he could undo the straps, but only on a bad day) and helped him to understand the boundary that this is mealtime, at mealtimes we sit down and we stay sitting down until we are finished.  We knew he was at the weight limit of the chair but when I had approached Occupational Therapy, they said they couldn't help us.  Because Adam was physically able, he didn't qualify for an SEN highchair - those are only for children who can't sit up.  So we kept him in his ordinary retail chair for as long as we could, knowing we were on a limited timeframe.

Then, it broke.  Now what?  We were at a loss.  We had tried booster seats previously, but they didn't help (Adam had a meltdown every time we tried to get him to sit in one) and sitting on an ordinary chair just wasn't the right option for a peaceful mealtime.  We were back to square one so I was onto Google, trying to find a solution.  

First, I found "Crelling Harnesses" in the UK (http://crelling.com) which design support straps for physically disabled children and also provide "houdini harnesses" to prevent children with autism from getting out of seatbelts in cars.  I bought one of their wheelchair harnesses as they are designed to provide support and to keep a child in place.  It was a pretty heavy duty thing as it's designed to help a physically disabled child to stay upright so it wasn't perfect, but I figured that in the absence of anything else, I could adapt it to use on an ordinary dining table chair.  I hoped it might mean Adam could sit on "a big boy chair" but still have the support and encouragement he needs.  Their service was excellent and I received the harness in 48 hours but the harness itself was indeed too heavy duty - the waist strap is fine, but Adam hated the shoulder straps that come with it as he couldn't move at all in the chair.  We've adapted it to remove the shoulder straps and so just use the waist belt and Adam is getting used to that, but there is still a downside as the chair he is sitting in does not have arms so he can slide his little legs off the side.   Once (and thankfully only once!) he tipped the chair over while trying to get off it - thankfully we were right there to catch him.  I think if I could find a "captains chair" which has arms that would keep his legs on the chair area and prevent this.

But still, I kept searching for an alternative...

Then, I came across "Children's Harnesses By Elaine" (http://www.childharness.ca)  This is a small business run in Ontario, Canada (so I was biased to like it already!) and it's owner, Elaine, handmakes a wide selection of incredibly creative harnesses for children with special needs.  The basic part is a harness that goes across the child's chest with straps under their arms and around their back (see photos below).  At first glance, it's not too different from other harnesses you can buy in children's supply stores except that it doesn't come with a cuddly toy or rucksack attached to it (something that may be cute, but can be very irritating to an SEN child) and the major difference is that this harness is strong - it has a 500lb weight capacity metal o-ring on the back, reinforced stitching on all of the seams, and an industrial strength snaphook for the walking reign.  All of the fastenings are on the back of the harness so Adam cannot reach them and so cannot undo them.  What all of this means is that when Adam is wearing this harness, he cannot get out of it, it will not snap - if he decides to "do a runner" this harness will allow me to hold on to him and keep him safe.  That's step one.



Adam wearing a "Children's Harness by Elaine"

The harness includes a number of attachments (sold separately) to help make life easier.  One of these is a special strap which allows you to clip two small loops to the back of a dining room chair to help an SEN child stay in a chair at mealtimes.  This is easily moveable (for an adult - a child cannot) and so it is easily transportable and can travel with you, wherever you may take your child to eat.

Then comes the best bit - attached to the harness is a walking reign that can be any size, but comes as standard at 5'8" (Elaine will custom make whichever size you request if you want it longer or shorter - I bought one at 3' and another at 5'8") and this reign can either finish in a hand loop for the parent to hold, or to a hands-free belt that the parent wears around their waist.  Once the harness is attached to this belt, the child is free to walk but cannot get away so they are safe.

Elaine has thought of everything - she even sells a custom made sweatshirt for chilly days with a small opening (specially reinforced) in the back to allow the loop of the harness to go through it without needing to remove it from the child.  I bought the sweatshirt in bright red but there are all sorts available.  It also means that, if you wish it to be so, the harness can be virtually invisible.




Because both the harness and parent tether are custom made, size is not an issue - whatever your measurements, or those of your child (even if they are a disabled adult!) a harness can be made to fit.  The huge benefit to this is that the harness can grow with Adam as Elaine understands that physical size does not always indicate ability or understanding.  Even if I chose to purchase an ordinary retail harness, it would only expand to the size of a large toddler because most retailers assume that a child grows out of the need for a walking reign or harness - but of course in the case of SEN children, that does not apply.

As I was browsing Elaine's website, I also came across another brilliant little thing - a medical warning label for the car.  I'm not a fan of those "baby on board" stickers because too many people just think they're cute and even though they were originally intended to inform the emergency services that a child was in the vehicle in case of a car accident, I don't think many people use them that way now.  But heaven forbid, if we ever had a car accident and I was not able to communicate with the emergency services, how would they know about Adam's disabilities?  Not being physically disabled, it's not immediately clear.  Adam does wear medical alert bracelets, but what if he had a meltdown when they tried to remove him from the car?  Or what if they tried to communicate with him, not knowing about his autism?  So this sticker, which I've placed under the windscreen where a tax disc used to sit, would give all of the information that was needed in case of emergency:


Front of alert sticker, visible from outside the car.

Back of alert sticker, only visible inside car or when removed.

Of course, I hope it's never needed, but it's peace of mind - and if it was needed, it could help the emergency services give Adam the care that he needs and cannot ask for.  The sticker also comes with an unintended benefit - I regularly receive "funny looks" (and sometimes angry ones) when I park in disabled spaces, despite having a blue badge displayed.  Some people seem to expect that I should be physically disabled, or expect to see me putting Adam in a wheelchair.  On a good day, when he is willing to walk, I often receive judgemental looks that very clearly say, "Why does SHE need a blue badge?  She's clearly not disabled...."  But already in a just a few days, I have seen a few people's eyes slide from the blue badge to the yellow sticker and that's the end of that.  It's not what they're intended for, but every little helps!

Considering I was making an international order, I expected to have to wait for it but I was very pleasantly surprised when Elaine replied to my email on the same day, and having hand made the harness and tether, posted it from Canada just three days later!  Royal Mail had it in my hands exactly 7 days after I placed the order.  The quality of the product is superb and the service was excellent.

Now after all this explanation, why is this purchase life-changing for me?  It's just a harness...isn't it?   Well aside from the benefits of being able to use it at mealtimes, which I've already explained, there's the other massive benefit - and this is the life-changing bit.  On the condition he's in a good mood and is prepared to do so, Adam is physically capable of walking but he has absolutely no sense of safety, risk or danger so he can take off at the drop of a hat and he's fast.  He has no conception of why he should stay with us, that sense other children have of needing to stay close to their carers is simply not present in Adam.  If he did take off, and I shouted after him, there is absolutely no guarantee that he would hear me - but even if he did hear me, he would be unlikely to comprehend the instruction or understand how it should affect his actions   

For this reason, anytime we're outside, Adam needs to either be holding one of our hands (and we need to be constantly alert for the moment when he snatches his hand away to run) or he needs to be seated in his special needs pram (and this is particularly helpful on the days when he won't walk because he is now big enough that I struggle to carry him).  But while I love holding my son's hand for the purpose of affection, eventually it would be nice not to have to hold it all the time - or to be afraid of what will happen to him if he breaks free.  Eventually, as he gets older and bigger, he's not going to want to hold my hand all of the time and then what?

Purchasing this harness - despite it meaning that I receive some funny looks as some people clearly wonder why I have my son on a lead - means that Adam can now have the freedom that most other children his age take for granted.  He can walk beside me on the pavement, he can walk from the front door to the car without holding my hand, and most incredible of all - on Saturday he could walk beside me while I did the grocery shopping and he had the freedom for the first time in his life to not need to be strapped into a shopping trolley.  In his own little way, he even helped me with the shopping, choosing the vegetables he wanted me to buy (and at one point a jar of fish paste...oh well, we can't always get it right!) and I was completely relaxed because I knew he was safe.  I could use both hands for the shopping and to control the trolley and he had the freedom to walk beside me.  On this occasion, he was very calm which was a blessing, but on the days when he decides to take off, the harness would stop him so this means that I can relax and no longer need to be constantly scanning for danger or on alert for the moment when he "snaps" and tries to take off.

These few moments of freedom are something Adam has never in his life experienced, outside a contained or fenced in environment.  Other children can walk beside their parents outdoors, or perhaps have the freedom to "run to the next lamp-post and wait for mummy" and I have often envied those simple freedoms but Adam cannot do this, for his own safety.  But with this harness, my son is safe but free.  It is truly the best piece of SEN equipment I have ever bought.  

If you happen to be in a similar situation, with a special needs child or adult who would benefit from such a harness, please do visit Elaine's website:  http://www.childharness.ca  It is well worth it and I highly recommend both her product and her service.


Elaine's Logo

Tuesday, 14 April 2015

"Dink!"

Adam is making some really exciting steps forward in communicating what he wants and asking for it.  Up until a couple of weeks ago, Adam showed no ability to tell us when he was hungry or thirsty or to show us what he wanted to play with, other than dragging us over to it (or screaming if he couldn't find it).  If I offered him a drink (speaking and signing the word) or the opportunity to eat, he would sometimes repeat it back to me, but he couldn't take the initiative to ask me for it in the first place.

But last week, completely out of the blue, Adam came over to me and looked like he was concentrating on something.  I watched him and waited until suddenly, he looked up at me and said, "Dink!"  At first, I wasn't sure what he had said as it was quite blurred but then he repeated it and when I said and signed back to him, "Adam do you want a Drink?" (putting a strong emphasis on the key word) he got all excited and repeated "Dink!"  When I gave him a cup of his milk/smoothie drink, he absolutely guzzled it down.

Then, a few days later, when I was picking him up from nursery, one of the workers told me they had been playing outside and Adam ran up to her saying, "Red!" At first she didn't know what he was referring to but then he tugged her towards the cupboard where the toys are stored (he normally completely ignores it) and once she was standing in front of it, he said, "Red!" again.  She looked inside and saw that there was a red trike visible behind a blue trike.  So she asked him, "Adam, do you want the red bike?"  He got all excited and started shouting, "Red!  Red!  Red!"  When she pulled the trike out of the cupboard, he climbed onto it and happily played for the next half an hour.

A couple of days after this, I was standing in the kitchen and getting Adam's dinner out of the oven, just before leaving for a meeting.  Adam left the lounge where he had been watching TV with his Dad and came to lean against the baby gate, peering up at me.  He watched me for a minute and then said, in a questioning voice, "Eat?"  I turned to him and said, "Adam, are you ready to eat?"  He gave me a big grin and repeated firmly, "Eat!" before running back to the TV.

On another evening, I was sitting at the table with Adam as he ate his dinner and he leaned over, grabbed my hand and tugged it towards his ear.  He pressed my hand against his hearing aid where I noticed that the pipe which connects the hearing aid to the ear mould had come loose.  I quickly reattached them saying, "Mummy fix!" 

In one final example, Chris told me that Adam had been playing on the trampoline in bare feet.  After a while, he sat down and his feet caught his attention.  He sat there examining them.  He looked at the sole of one foot, which was very dirty.  Then he turned his foot over and examined the top of his foot, which was clean.  He turned his feet over a few times, carefully examining the difference and then finally, pushed his foot over to Chris.  Adam didn't say anything, just offered his foot, but that simple moment of self awareness is huge - and it's new.

Each one of these events are quite small and simple.  For some, they may seem unremarkable because by the age of four, most children can speak in full sentences and easily convey what they want and need.  But this is not the case with Adam, up until now he has never been able to tell me that he is hungry or thirsty or that something is "wrong" in his world, he generally just starts crying, screaming or throwing toys and I have to run through a list of possibilities asking him each one until I find the clue - a slight moment of calmer behaviour, a moment of eye contact or very occasionally, a repeat of the word I have offered to him.  

So for Adam to understand what he wants or needs and then to be able to communicate it to me or to other adults caring for him is absolutely extraordinary.  It's a huge step forward.  There are of course still many things he cannot do - for example, any sense of "wet" or "dirty" to indicate the need for a nappy change is still absent - but these small steps indicate huge progress and they are so exciting.