The survey, which was carried out on over 300 people found that over 90% of cases were due to lifting or moving your child.
Although 100% of respondents admitted to experiencing back pain, just 58% of people have seen their general or family practitioner about it.
Only half of respondents take medication for the pain and over 70% receive treatment, with the most popular treatments being an exercise programme, physiotherapy and chiropractic treatment.
It is important that parents and carers take care of themselves as well as their child. Here are some tips and advice:
If you need to help the person you care for move around, it is important that you are aware of how to do so safely to reduce the risk of hurting yourself or them.
Whether is it into and out of bed, to the toilet or getting in and out of the car, these activities can be quite strenuous, sometimes involving the movement of heave equipment as well as a person.
NHS Lifting checklist:
If you are regularly lifting someone, it’s best to get trained or see the best techniques demonstrated.
Therapy is useless, the therapists are just so tough and rough. When you ask them to make friends first of all so Dida will cooperate they tell you you’re spoiling her and they tell you with this attitude she’ll never walk.
When she vomits out of frustration they make faces and look disgusted so you try another centre and the result is the same.
We took her to the Bobath Centre in London where the therapists were amazing. She made friends with the therapists and responded to what they taught her and made really good progress.
Then we took her to the USA. Again it was a centre where they were specialists in dealing with children with all sorts of disabilities, behavioural, learning, physical, etc.
They made the therapy fun.
Again she did well. They would tell the child “let’s go and play” and they made it fun. They wouldn’t force them if they had a meltdown so the results were good.
However, all of these treatments have to be self-funded. Equipment is very expensive and we don’t have any government funding – there are lots of children who need specialist care.
There is a centre for Downs Syndrome which is amazing but it’s only for Downs Syndrome.
I really wish it wasn’t necessary to have to go overseas to get the treatment that so many children need and furthermore, not everybody can afford to do this.
Air fare is expensive, accommodation, actual treatment and equipment drain your finances but you just can’t just sit back and do nothing.
I know a lot of people complain about the National Health Service but people really have no idea how lucky they are to have this facility.
I was brought up in the UK, worked and paid tax and national insurance contributions and I moved to the Middle East when I got married. I returned to have my three children in the UK although I did choose to go private but I constantly return and am so grateful when there is an emergency that the NHS is available.
We will continue to support our daughter and her husband to pay for this necessary treatment for our granddaughter and just pray that she will eventually be able to walk even with assisted appliances.
As far as mainstream school is concerned that is another problem.
Currently, she’s is at preschool where she’s allowed to have a nanny with her because she has CP.
The school are very considerate as many establishments simply refused for anyone to accompany her, but we will overcome that obstacle if we can’t get her into one of two schools who take special needs kids.
It is very frustrating and just not possible to move back to their UK so we just have to make the best of what we have, she has just started therapy now with a wonderful therapist recommended by her paediatrician.
She’s only had a couple of sessions but the first thing she said is that they would have to spend the first couple of sessions getting to know each other, making friends and gaining trust.
So far, so good.
This is what we want, so let’s hope that we’ve finally found the right person.
Sounds simple enough, but where’s your thymus gland?
Your thymus gland sits right behind your breastbone.
When we have an emotional or physical disturbance our thymus gland can shrink or become depleted of this vital life energy.
Can you imagine what that feels like? Or better yet, you know what that feels like no doubt.
You see, the thymus functions as both an endocrine gland and a lymphatic gland. That’s a double whammy in a good way to protect us.
T-lymphocytes (T cells), also known as “killer cells” are produced in our thymus. They’re such critical cells of our adaptive immune system.
Curiously enough, the thymus is the largest when we’re children, before puberty.
As we age it shrinks and is replaced by fat but those important T-cells continue to be generated through our adulthood.
When life gets out of sorts and daily stress seems to eat us up inside it is these very critical cells that get minimized in production.
Here’s what I’m talking about — a way to thwart that process in times of swirling stress!
T-cells are the hunters and destroyers for your immune system. We need to boost those!
So what’s the thymus?
Think of your thymus as your immune system’s surveillance gland.
Not only does our thymus gland change with age it can also be hampered when we overuse medicine. Too many pills can overtake the responsibilities of a healthy immune system.
Our system can stagnate and atrophy, becoming even less able to fulfill its responsibilities.
But even in an atrophied thymus gland, the production of T-cells continues throughout our adult life.
So boosting that function can only serve us.
The Thump to the Rescue!
You can use the thymus thump as a means to reinstate the single most important function of our thymus gland: to keep it active and bolster our immune system, especially when our lives get so busy and we’re scurrying left, right and center.
Thumping the middle of your chest can help bring up your life energy.
When the thymus gland is in harmony it can increase your strength and vitality.
Thumping the thymus can help keep your own life energy pumping and vibrating at a high frequency.
You need all the vitality you can get.
And it’s easy peasy to do!
Okay, how to do it:
You can thump in the middle of your chest with your fist (think Tarzan).
Or, you may want to rub softly or firmly or scratch with four fingers of your hand.
Do this for about 20 seconds and breathe deeply in and out.
You can also add an affirmation such as “all is well in my world” or even think about something positive and pleasant.
You may know when you have activated the thymus gland as you will feel a little tingling or a subtle feeling of ‘joy’ or ‘happiness.’
Another variation is to do three thumps at a time but emphasize the first thump more firmly.
For some people it may take a little time before you ‘feel’ anything.
Persevere and be patient, you’ll get it. Your body will pick it up.
Do it everyday. It’s simple and easy to do anywhere.
If you suffer from anxiety, panic attacks or overloaded stress, thump your thymus several times a day.
This will allow your life energy to come alive.
And because it’s easy to do try to make it a regular practice.
I end my shower every morning whilst the water is still on me with about 7-10 three beat (da-da-da) thymus thumps.
Cerebra is flexible in what it will fund, check out this link for some examples of things they have funded in the past.
A Cerebra Grant must be for the direct benefit of a specific child and can not fund equipment for schools or groups.
Who Can Apply?
You can apply if your child is 16 or under and has a neurodevelopmental condition. The item being applied for must improve your child’s quality of life and should not be provided by a statutory body like the NHS, LEA or social services.
Making an Application
You can download and print a grant form from the website. Alternatively call Cerebra on 0800 328 1159 or email [email protected] to request a copy.
They are at the same crossroad you were at years ago; fighting for their child’s life and clinging to the hopes of a miracle.
You know their journey is just beginning, where you have traveled yours for sometime now. Yet it all propels you back in time, as if you are reliving those moments all over again.
In an instant you can smell that distinct NICU hospital scent, you have phantom pain from the emergency c-section that you cannot remember due to general anesthesia, you feel the incredible pain and joy of touching your child for the first time and hearing the words “revived, seizures, brain cooling.”
Heavy denial surrounds you as you fail to realize that western medicine cannot heal the human brain.
Time stands still because you’ve been there.
And now another set of parents are following in your painful footsteps. You wish to rescue them – even though you have never met them in person, and only know of them via Internet connections and special needs social media groups.
They may have sought you out intentionally seeking a story of survival… but not just survival but a story of complete healing and recovery.
You struggle to find a way to gently tell them about your child’s severe disability. They long to hear the words, “Everything will be just fine.” But you know the odds are not in their favor.
You itch to tell them in a different way it will be okay, just not in the way they wish it to be – to show them that life on the side of special needs parenting is of course heartbreaking, but incredibly beautiful and filled with unspeakable joy for being able to experience the gift of your child’s life.
Afraid of scaring them, you simply confirm what they need to hear in the moment, which is it will be just fine to get them through the next hour, day or weeks ahead.
These parents are fragile and worn raw from their tears, pain and heartache.
You’ll wish to take it all away from them, as someone wished they could have done the same for you.
You know in your heart they’ll likely join the club no one wants to belong to… that special needs child club.
A world filled with life-long disabilities, hardships, and struggles. A balance of joys, bittersweet memories, and the intense and immeasurable love for a child that is dependent upon you for a lifetime.
Inevitably you will cry tears for another couple’s child because the start of their journey mirrors your own. And only another person having lived those moments can truly feel and understand the gravity of the experience.
You hope that they keep in touch as they move forward on their journey, because you know they will need more support than the world will give them.
Now, you may be thinking…”Whoa, hold on, getting an Autism diagnosis is not the same as losing your child!”
But to me, it was! I was grieving the loss of what I had hoped and dreamed life would be like for my child, and I was being told that those hopes and dreams would not come to be.
Zoey was here and thriving and just the most beautiful light that anyone had ever seen.
We were always hearing people say, “She is so beautiful!” and she is! I was there when she entered my life and I was there when she, “went away.”
Unlike Sally Fields character I didn’t find it all so precious to witness this happening.
I was grieving in a way that only could be felt and not explained.
I constantly replayed the scene of the movie in my head. I related to her, to that grieving aching mother…I wanted my daughter back!
When we got the diagnosis, I was Sally Field in Steel Magnolias, screaming, “I WANNA KNOW WHY…I WANNA KNOW WHY!”
And inside I was screaming, “I’M FINE…I’M FINE…I’M FINE!”
But I was not fine!
I was selfish, I wanted her here with me, just as she had been before, and just like in the movie, I ached for my daughter that was once here and now was not.
I started thinking about her future, and all the things I could do that she couldn’t do and I was angry, hurt, sad, confused, and so scared.
On August 8th, 2014 our youngest daughter, our baby was diagnosed with Autism Spectrum Disorder and Global Developmental Delay with having the communication skills of a 6 to 8 month old.
She has Sensory Processing Disorder and OCD as well.
To say I was and still am crushed is an understatement.
When you find out you’re going to be a Mom you have hopes and dreams for your child and you want them to be healthy and happy…
. . .never did I dream I would have a child who was nonverbal, who could not tell me or even point to what she wanted or needed, a child that found it painful to make eye contact, painful to give or get hugs and kisses, and a child that was in her own little world, finding comfort alone and not even looking up when calling out her name.
You mourn for this child, you grieve, you and your family go through bouts of denial and acceptance many times, and you cry…All of it normal and okay!
It’s been a year now and so much has changed, I’ve changed, Zoey has changed and I can honestly say that I can flip the script.
I am fine, I don’t need to know why anymore, she is still my beautiful happy little girl and she has taught me so much about life.
She may not be able to do the things that I can do, now. But I’m not counting her out, she is a fighter, tough as nails…my little steel magnolia!
You can find love, life, and laughter after walking through grief!
We often work with children in static positions, telling parents to position their child this way and that. However the movement between the positions is just as useful if we are at the point of being able to achieve it.
Teaching rolling may be a skill your therapist has worked with you on, assisting either from the hips or the top arm.
Lying to sitting is a more complex movement that children complete in a variety of ways. Very bendy children may lie on their tummy and almost reverse over their legs, going into the splits and sitting themselves up.
Some push up to almost crawling position, and sit back into a W-sitting position, where the knees are bent and the feet by the side of the bottom. This is a position to avoid!
As I mentioned in a previous blog it is important to work on movement patterns in order to avoid destructive postures. This section will explain one (but not the only) way to assist your child into sitting from a lying position.
You should be able to try this transition if your child is able to sit with head control and support around the hips only. If you are unsure if your child is ready, you should seek guidance from your therapist. They will be able to guide you if your child is ready to progress to these skills, and the best ways to do it.
Possible Difficulties:
Children need to repeat movements many times before they are properly learnt. This is tough for children with any kind of movement difficulty.
It is important, not only that they master the back lying, tummy lying and side lying positions, but also that we work on the transitions between them. I have often seen children who are excellent in static positions but then get very frustrated at not being able to move out of them.
Transitions involve movement through many planes, with the body bending (flexing), straightening (extending), turning (rotating) and moving individual limbs in isolation of each other. The lying to sitting transition involves most of the previously discussed positions, with arms lifted up against gravity in back lying, movement to side lying, weight bearing through one arm pushing up to side sitting, then correcting the body to sitting.
With such a complicated series of movements, no wonder we have to master the individual positions, and consider how children develop leading up to this!
Solutions:
Starting with your child lying on their back, hold one hand and assist them into side lying by taking their hand across their body.
Gently then lead the arm away from the floor, but still slightly in front of their head. They should lift their body slightly and their weight should push through their elbow – it is important you assist and not do all the work for them.
You can tell if your child is pulling back on your hand “bracing” with the arm you are assisting. They should have head control, holding their head up themselves and moving their body to assist. If they are not taking part, it will feel like they are hanging from your hand. As they improve you should be able to help less and less with each part of this transition.
With your assisting hand gently ease it in the direction they need to go to sit themselves up more. Generally this is slightly forward and side.
This will ease them up into a side sitting position so their weight is now pushing through their hand – they should still be pulling against your supporting hand. If they stop actively pulling up at this stage you can place your other hand on the body and ease them into a sitting position.
If they get themselves up to sitting they may still need a little hand to get their balance!
You can hold their other hand as pictured or hold onto their body at this stage until they get their balance.
If you are unsure of any part of this manoeuvre you should ask your therapist for advice. It may be your child is not ready or your handling could be slightly tweaked to ensure your child is active. Again, unless directed by your therapist, this should only be tried when a child has independent head control in sitting and only requires minimal help to maintain sitting balance.
From these early positions we have taught good movement patterns with rolling and moving to sitting. We have hopefully avoided “cheating” & “destructive” patterns of movement and postures early on in a child’s journey. If the early building blocks are set well, the later building blocks will fall much more easily into place!
Continue on to Part 3 to learn about kneeling and crawling position.
Part 2 Webinar!
Nick talked us through his early intervention tutorials live over a series of webinars in March and April 2016.
Part 2: Sitting Pretty – Transitioning from the early positions, is available below.
What did I do when I found out my child had special needs?
I went through the different phases of grieving.
I denied that this was happening. I was angry with the doctor who told me.
Thinking about it six years later I am still furious with her.
I was depressed and extremely sad about all the things I am never going to be able to do with my son.
But at the same time I am pleased about the things he learns.
I am extremely thankful about the love he gives me every day. And I have accepted that I cannot change the fact that he has Lissencephaly.
It is what it is and at a certain point you have to face reality and make the best of each situation.
I take one step at a time.
My son is six years old now and goes to school.
He loves the noise there and that the teachers challenge him every day. He has become older than the internet predicted he would.
He learns things, he laughs and has fun. We take each day as it comes.
We go to therapy and do things he loves, like horse riding or swimming.
Friends and family tried to comfort me by telling me that he will be just fine.
I hear so many miracle stories about kids with special needs which fully recover.
Colleagues tell me about a therapy in Hungary which has been very successful.
Or that the therapists in Poland are so much better than the therapists in Germany.
About a friend of a cousin’s friend who knows a doctor who gives very special treatment in England.
Sometimes, it is overwhelming.
Don’t get me wrong, I am grateful for all the suggestions.
However, with time, I developed a kind of radar system. It lets me filter the flow of information into, “not worth looking at”, and, “worth researching further”.
A good friend told me once that I cannot know for sure that my son will die.
But I know for sure.
I need to deal with the fact that he has a deadly illness. I cannot live in denial.
I have to live with all the, “side-effects”, of his brain disorder.
Naturally a small part of me hopes that the diagnosis is wrong, that he will outlive me. And another part of me thinks about the songs which will be played at his funeral.
Am I a terrible mother for thinking such things?
I don’t know. It’s the only way to deal with the future for me.
Sitting Pretty – Transitioning from the Early Positions:
In this Blog we will be looking at how the Playpak can assist with early sitting and progressing to more advanced sitting activities.
We will discuss the various challenges children face with sitting and then at the end we will discuss a nice technique to help you teach your child how to get themselves from lying to sitting.
You may wish to refer back to my previous blog about lying positions to help your child develop the early postures and movements needed to the progress to the more advanced sitting positions.
Early Sitting
Common difficulties:
Children who have low tone often slouch too much when sitting and take a long time to develop the stability needed in their tummy and back muscles to hold themselves in this position.
Children with high tone often increase their tone when challenged and if not supported adequately will adopt poor postures in an attempt to support themselves. They do not choose to adopt these postures and it is not the most comfortable way for them to sit; it is simply their over-active muscles forcing them into unwanted positions.
With early sitting it’s important to remember that it is a very taxing position; inadequate head control with head flopping forward can make it hard for babies and infants to breathe easily – so work within the limits of your child or with guidance from your therapists.
Solutions:
Playpak can be used in a reclined sitting position.
In this position we can work on reaching hands forward for toys. As baby becomes more able and comfortable in this position we can remove the roll at the base of the horseshoes and sit them with their tummy at the back and the strap over their pelvis to give support.
From a reclined position we can also do baby pull-ups encouraging them to maintain their own head control.
Aim:
We want your child to start to develop their core stability to sit themselves up. At first we are aiming for head control, so reclined sitting is OK as fully upright sitting may be difficult to maintain. For a child to use their hands in sitting, it is essential that the trunk has adequate support, much of which can be given by Playpak with horseshoes, strap and rolls.
At first we want hands coming forward, encouraged by doing the activities discussed in the previous blog. This will help baby to prop up their trunk, until they get adequate trunk control.
Hands on knees or playing with feet are ideal, and when enough trunk support is given or control is gained, then hands will be used to play.
Advancing Sitting Postures
Once baby has enough ability to maintain more of their own sitting postures, they can start to enjoy and improve on it. With Playpak, support can be progressively taken away so the child is more and more active on their own.
Solutions:
We can take away the second horseshoe so the upper trunk isn’t supported.
Sit the “wrong” way in the support.
This will still maintain the leg position preventing looped sitting. Looped sitting is a natural way babies initially learn to sit as it gives them a large base of support. We call it looped as the legs roll outwards from the hips and knees – bending feet then touch each other making a loop with the legs. This in encouraged at first however to progress with sitting so that baby can move from side to side we would like to work on long leg sitting where the knees are straight and point up to the ceiling, as opposed to pointing to the walls.
In this backward use of Playpak we can place items on top of the horseshoe to encourage upright sitting and activation of back and tummy muscles.
Playpak offers many sitting postures and supports but working toward side sitting is where we want to be. We start this by working on “long sitting” with the legs straight out in front. The horseshoe does this for us.
We can then place objects to the side of the support, with the lap strap removed, so baby has to reach over the edge where they will begin to roll their legs toward that side.
This is the start of side sitting and will progress to baby being able to place weight through their hand on either side. Side sitting is an essential transitional position we move through to get up from lying and to move into kneeling.
Practising this type of position will also help your child learn saving reactions to save themselves when they fall from sitting. This also develops saving reactions for later use – from standing! Consult your therapist for more activities you can complete in side sitting.
Read on to learn about how you can work on lying to sitting transitions.
Part 2 Webinar!
Nick talked us through his early intervention tutorials live over a series of webinars in March and April 2016.
Part 2: Sitting Pretty – Transitioning from the early positions, is available below.
