Hippotherapy (Horse-Riding Therapy)

What does Hippotherapy involve?

The rider will typically sit on a sheet rather than a saddle in order to feel and respond to the movement of the horse.

The movement of the horse is usually controlled by a specialist handler under direction of the physiotherapist, the rider will not be expected to do so.

As the horse walks, it transfers movement patterns to the rider’s lumbar spine and pelvic regions which are similar to those used in normal walking.

This in turn gives the rider the opportunity to practice normal movement responses and balance.

Who can benefit from Hippotherapy and how?

Horse riding allows those who have trouble moving independently to experience the sensation of free movement. Disabled riders often report increased confidence and self-esteem, particularly when they work towards and achieve personal goals.

Hippotherapy has been shown to improve posture, movement and muscle strength (particularly head and trunk control) and to develop balance reactions.

Spending time with a social animal such as a horse is also known to lower blood pressure in humans. It is a relatively new therapy in the UK (having been practiced for around 15 years by a small number of physiotherapists) but is growing in popularity.

In Germany, where it originated, it is a mainstream treatment and widely available to children and adults.

People with movement and neuro-motor disorders in particular can benefit from hippotherapy, including cerebral palsy, spinal cord injury and stroke. (Tate, 2014) Other conditions that can find Hippotherapy include: · Autism · Multiple Sclerosis · Down Syndrome · Dyspraxia · Paralysis · Head Trauma · Convulsive Disorders · Amputation · Muscular-Dystrophy · Scoliosis · Arthritis

Availability & Cost

The average cost of a session (30 minutes) is $30-50 dollars.(£20-£40/€25-€45).

There are a number of Hippotherapy Associations that are able to provide information regarding practitioners and their costs:


Professional Association of Therapeutic Horsmanship International (http://www.pathintl.org/)


The Chartered Society of Physiotherapists (http://www.csp.org.uk/)

Riding for the Disabled Association (http://www.rda.org.uk/)

RideAbility (http://ride-ability.org.uk/hippotherapy)


North American Riding for the Handicapped Association (http://narha.org/)

American Association for Horsemanship Safety (http://asci.uvm.edu/equine/law)

American Medical Equestrian Association (http://ameaonline.org) American Youth Horse Council, Inc. (http://www.ayhc.com/contactus.htm)

Bermuda Riding for the Disabled (www.brd.bm)


Canadian Therapeutic Riding Association (http://cantra.ca/)

Ontario Therapeutic Riding Association (www.ncf.ca/trott)

South America:

Ecuador: Fundación AM-EN (www.fundacion-amen.org)

Mexico: Asociacion Mexicana de Equitacion Terapeutica (www.gromex.org/amet)

Mexico Equestrian Rehabilitarion Centre “Las Aguilas” (Alberto Ziehl: [email protected])


Belgium: Hippodecom New (Genevieve Preat: [email protected])

Czech Republic: Obcanske Sdruzeni Svitani Jablonec Nad Nisou (www.os-svitani.cz)

Italy: Aiasport Equestrian Activity (www.imprese.com/aiasport) Associazione Lapo (www.associazione-lapo.it) Centro Nazionale Ricerca – Assistenza e Formazione (www.cnranire.it)

Netherlands: Federatie Paardrijden Gehandicapten (www.verenigingfpg.nl)

Slovakia: Slovak Hippotherapeutic Association (www.healthnet.sk/sha)


Israel: Therapeutic Riding Centre of Israel (Niri Givoni: [email protected])

Japan: RDA Japan (www.pmet.or.jp/~jp)


Hippotherapy remains an experimental treatment due to the insufficient scientific evidence for its effectiveness in the treatment of CP, autism, and other conditions characterized by motor dysfunction.

More studies are required before it can be widely recommended as a treatment, however there is evidence to support Hippotherapy:

• Bass, Duchowny, and Llabre (2009) examined the effects of a twelve week long therapeutic horseback intervention on social functioning in children with autism spectrum disorder. The results showed improved social interaction and increased attention in the autistic children. These findings indicate that hippotherapy may have a place in the treatment of children with autism.

• Benda, McGibbon and Grant (2003) examined the effect of hippotherapy on muscle activity in children with cerebral palsy. The results showed a significant improvement in symmetry of muscle activity was noted in muscle groups that had displayed the highest asymmetry prior to hippotherapy.

• Sterba MD (2004) examined if hippotherapy improves gross motor function. The study included eleven published studies on instructor-directed, recreational horseback riding therapy and licensed therapist directed hippotherapy. Sterba concluded that hippotherapy is effective for gross motor rehabilitation.

• Macauley and Gutierrez (2003) examined the effectiveness of hippotherapy for children with language-learning disabilities. Three boys aged nine, ten and twelve years old took part in this study. The results showed that after both therapies the children improved their speech and language, however, the responses were noticeably higher following hippotherapy.

Challenges of Hippotherapy

Despite the support hippotherapy has received, there are several negative factors to hippotherapy:

• COST- Each center charges different prices for hippotherapy. In order for hippotherapy to be effective, it must be practiced frequently. This can get very expensive for families.

• LACK OF INSURANCE- Unfortunately, most insurance companies do not pay for hippotherapy. Having to pay for every session may not be feasible for some families.

• AVAILABILITY TO CHILDREN- There are centres all over the world that practice hippotherapy, however some geographical locations may only have one centre available to them. This could cause difficulty in making arrangements for transportation, adding to the cost of receiving hippotherapy.

This could also result in a long waiting list. Any feedback, questions and/or input is greatly appreciated!

Planning A Holiday

OK, we’d take a significant number of those stresses and strains with us (and I don’t just mean the husband!) but the mundane day to day reality could be left behind.

We agreed with our nurse that it was important for Sean, Hugh’s older brother, to have the normality of a family holiday and that it would be good for us as a family to just get away from it all.

How though, how do you travel anywhere with a medically fragile child?

Well you plan. And you plan. And then you plan some more.

We explored every outcome, every possibility, every potential emergency and how it could be dealt with. We’d go somewhere by the sea so it felt like a ‘real’ holiday but not so far from home that we couldn’t get back quickly should we need to.

We’d find somewhere with decent local hospitals and good emergency departments. I took to the internet and searched for hospitals in various locations.

I asked in Facebook forums about the children’s wards. And we chose a holiday destination equidistant from two major hospitals with good emergency facilities.

We printed letters from Hugh’s paediatrician, detailing his condition.

We had an extremely comprehensive seizure management plan drawn up. Hugh’s community nurse wrote three A4 pages containing everything you could ever possibly need to know about Hugh – from the different medications, strengths and doses he was on, to his known allergies; previous treatments and operations, to how he presented with different illnesses and suggested responses.

We printed contact details for the majority of his medical team and filed it all in an envelope marked ‘In Case of Emergency’.

We contacted the holiday park to declare that we’d have oxygen with us and asked about insurance for that.

We discussed with them how an ambulance would find our specific caravan, the average wait for an ambulance and the transfer time to hospital.

We asked about the medical training of the staff on site.

We’d be travelling by car, so we would be able to bring all the medical equipment we’d need with us, however I contacted the oxygen supplier and the enteral feed supplier to discuss options should we run low and need additional supplies.

The lists of what we needed to bring were endless – we checked and triple checked them: sats monitor, sats probes, travel oxygen, nasal cannulas, oxygen mask, bag and mask, suction machine, nebuliser, feeding pump … and spares of everything.

We packed boxes and boxes and boxes of feeds and medication and syringes.

Hugh’s wheelchair took up an inordinate amount of room in the car, squished in alongside that was the P-Pod – a wonderful specialist moulded beanbag so that Hugh had somewhere to sit in the caravan.

With all the medical and feeding equipment wedged in too, there was barely enough room for clothes.

The accommodation didn’t need to be accessible, since Hugh was only two and a half.

We could still easily lift him in and out of most places. Beds weren’t so much of an issue either, with carefully placed pillows he could be kept safe in a single bed.

These however are issues that will certainly affect future holiday choices.

Carefully and meticulously we planned every last detail of that first holiday and still our nerves were stretched. We’d been to Ireland with him in the past but since he’d become seriously ill we’d rarely travelled any distance at all.

What if he stopped breathing while we were on the motorway? What if he got sick while we were on the beach? What if? What if? What if? …

There was only so much we could control, for everything else we tried to plan in advance what we’d do.

It was nerve-wracking and mentally exhausting.

Organising that holiday wasn’t easy but I’m so glad we did. The benefits for Sean, for our whole family, far outweighed the difficulties.

The holiday itself was amazing and worth every minute of planning. The sun shone every single day and there was rarely a cloud in the sky.

We built sandcastles on the beach and chilled out in the sun. We had coastal walks together and splashed in the sea. Sean danced and danced to the evening entertainment.

The boys shared a bedroom for the first time.

We had fun. We laughed. We made memories.

Angelman Syndrome – Logan’s Story

Now for the science bit, Angelman Syndrome is a rare genetic disorder first described in 1965 by Harry Angelman, an English Physician.

Features of Angelman include a happy demeanour, easily provoked laughter, developmental delay, affinity for water, sleep disturbance and mouthing of objects.

Angelman is caused by a lack of expression in the UBE3A gene – there are 4 causes for this:

• Deletion of the AS critical region on maternal chromosome 15q11-q13 (the most common type).

• Paternal uniparental disomy (UPD) for chromosome 15.

•An imprinting defect causing lack of expression of the maternal copy of UBE3A.

• Mutations in the maternally inherited copy of UBE3A

For many people reading this the genetic causes of Angelman Syndrome will mean very little.

They don’t tell us the challenges (and highlights) of raising a child with Angelman Syndrome.

To help us gain a better understanding of what it’s like to live with Angelman Syndrome, Abby James shares Logan’s story.

‘Logan was our much anticipated first born child. He was induced at birth and he struggled to latch on so was slow to feed.

He was kept in intensive care for his first six days to help regulate his blood sugar levels. I never felt overly worried and we were reassured this was quite common.

A tongue tie was suggested as a reason for the slow feeding. Logan soon came home and we settled into life as a family.

Having a new baby in the house is challenging at any time but Logan had particularly bad reflux and digestive problems, which themselves are associated with Angelman Syndrome.

But of course many little babies suffer similar problems.

As the months went on I discovered the words ‘Developmental Milestones’, and it soon became apparent to me that Logan wasn’t meeting his developmental milestones.

I was a first time mum with very little experience of babies and young children so I wasn’t overly sure what to expect but at six months he wasn’t attempting to sit up.

Looking back it’s easy to see all the missed opportunities.

Logan wasn’t seen by a Health Visitor, his weight was charted incorrectly so it appeared he was putting on weight when he wasn’t. His reflux and digestive problems were seen as a single issue.

He was charted as having a small flat head again another characteristic of Angelman Syndrome.

None of these things were put together.

After many visits to our GP, Logan was eventually referred to a Paediatrician for ‘failure to thrive’ at one year old.

It was during a subsequent appointment for bloods that Logan experienced his first recorded absence seizures.

With hindsight he might have been having these seizures for a much longer period of time but they hadn’t been apparent to me.

While we were waiting for a referral to a different hospital for an EEG, my sister shared with me an article about Colin Farrell and his son.

His son James has Angelman Syndrome and I immediately related to the description of James outlined in the article.

I began to do my own research and was shocked to realise that Logan ticked the box for every single characteristic of Angelman Syndrome.

I showed the article to our Paediatrician and it was agreed that we test Logan for the syndrome.

During our wait for test results, Logan had his EEG and I explained my thoughts around Angelman Syndrome to his Neurologist.

The results shows a classic Angelman pattern of seizure activity and the Neurologist said he would give Logan a ‘clinical diagnosis’ based on the EEG if the genetic testing proved inconclusive.

As it turns out the results came back one week after this appointment and confirmed that Logan had a de novo deletion on the maternal chromosome 15q11-q13 otherwise known as Angelman Syndrome.

In many ways having a diagnosis made life easier, we were able to seek out the support we needed.

We found an amazing community of Angelman families eager to provide help and support. We are fortunate to have Angelman families living not too far away who have become good friends.

The ASSERT charity and Angelman Syndrome Ireland are both well-established charities providing excellent resources for families including annual conferences and workshops.

Without this help and support and being able to connect with other families, those with Angelman Syndrome and other disabilities I’m not sure where I would be today.

Logan experienced very poor health in his first few years with numerous hospital admissions for reoccurring throat infections – many parents of young children will have experienced similar.

But for Logan each infection resulted in increased seizure activity and during one bad drop seizure he knocked himself unconscious. Logan also had a tonic clonic seizure following a bad infection.

It’s not an easy journey to be on and each year as Logan gets older we face a new set of challenges.

Every parent of a disabled child will identify with the difficulty in getting to every hospital appointment especially when you live in a rural area.

Finding the correct school placement and securing the right levels of therapy in a system already stretched to the limit. It often feels like the ‘system’ lets down children like Logan.

If the correct provision was available what progress might he have made? You move into wheelchair services and the wheelchairs become bigger and heavier so you need a wheelchair accessible vehicle.

Logan can crawl, pull himself to standing and take supported steps.

Although we are delighted that he has some form of mobility, he has no sense of danger so this independence brings a whole new set of problems.

Like most children with Angelman, Logan has disturbed sleep patterns so we had years surviving on very little sleep until we secured funding for a Safe Space bed which has been a game changer for us.

As has an extension to our family home, space to store Logan’s essential equipment, provide him with the sensory and soft play equipment he needs and just enjoy family life in general.

Logan also has excessive laughter another characteristic of Angelman Syndrome.

The outside world see a happy, smiling boy but we can’t tell if the laughter, his only form of communication, is masking a more sinister cause such as pain or discomfort.

Logan understands a lot that we say to him but has no means of communicating back to us, as his mum I find this particularly difficult.

Logan is a happy, sociable boy, he has a really strong bond with his Dad which is amazing to watch. Like most children with Angelman he also loves water play.

Logan adores his little sister, when we brought Emily home he thought all his Christmases had come at once.

We had to keep Logan away from Emily when she was a baby because he just wanted to be affectionate to her but didn’t understand his strength or how to be gentle.

Emily is now a strong and sturdy 4 year old who gives as good as she gets. They fight like cat and dog but their bond is so tender and loving.

Emily meets Logan from the bus with his favourite toy every day and asks for a biscuit for Logan when she gets hers.

She is his voice and his protector.

With Logan and Angelman Syndrome we’re used to new challenges and our latest exciting challenge is Wookie, our black Russian Terrier.

Wookie is being trained as a service dog for Logan and has just passed his first assessment. He will respond to Logan’s seizures, provide stability and stop Logan getting into danger.

We are so excited at this new addition to our family.

Angelman Syndrome has brought times of desperation and heartbreak when the seizures are bad, or the behaviours are really problematic, making socialisation or general every day life virtually impossible,

But then there have been some really special times. Tiny insignificant moments to most people, but overwhelmingly incredible to us.

It is a real roller coaster of emotions.

Family and friends offer fantastic support, which we are so grateful for, but it’s hard for them to fully understand the difficulties we face.

Keeping Romance Alive

My husband and I always try to find little ways to keep the romance alive.

Sometimes in a hectic and overwhelming week we’ll treat each other to simple gifts just because.

This could include a single flower, to a candy bar, or a hot coffee drink.

Something little that says I was thinking of you and you are loved.

After a hard and long day there is nothing more romantic than a cup of coffee to keep me on my feet!

When you are raising two small children, and one that is severely disabled sometimes there isn’t a lot of you time.

A romantic gesture can come in the form of drawing a bubble bath for your significant other, while the other parent watches the children.

Or giving your partner time to sit down for the first time all day while you clean up after dinner.

Feeling like there is a moment to reconnect with yourself because your partner wants to share the load keeps the love  flowing.

Sometimes love needs no words, a tender look into your partner’s eyes can say it all.

I’m here for you, I need you, I love you. An unspoken code that soul mates just have with each other.

Romantic Dinners can be a huge challenge, especially if you are lacking in respite care.

But we’ve found some great romantic ways of dining in at home.  A well thought out prepared meal at home can look just as fancy as any restaurant could serve and often times be half the cost.

To keep things interesting we even make a point to dine-out on the patio on nice weather or use the dinning room – even if it’s not a special holiday.

Making a meal at home, even with the children present can be romantic and filled with love.

My husband and I will sometimes trade duties or chores.  We’ll take turns with household duties, assisting with the children, and balancing the needs of our special need’s child’s exercises and therapies.

This helps feeling connected to the life we both share, the good times and the more challenging times.

Love notes are sometimes a subtle way of reminding your partner about how you feel.

We get so wrapped up in day to day routines that we don’t always have an opportunity to say what is on our mind.

Post-it notes on a bathroom mirror, or sitting by the computer waiting for you to check your email to say I love you.

Gentle whispers of love to remind you that Romance is still alive.

When I asked another special needs parent how they kept romance alive, the reply was: “The most important thing to remember is reconnecting with each other…

Saying I love you, having cute code words that only the two of you know what they mean, making each other laugh, never going to bed mad.

I think parents stop making time for each other, to just be together, stay intimate, it’s the closest two people can get.”

Wishing you all a beautiful Valentine’s Day filled with lots of extra romance!

Tell us how do you keep romance alive in your life while balancing a child with special needs?

Blended Diet for Tube Fed Kids – Our Journey

It’s amazing what you can learn and how quickly once you are plunged (no pun intended) into this strange world of tube feeding.

Within weeks we were able to re-pass Amy’s NG tube, we would spend our days cutting up duoderm and reapplying it to her face; we would spend time researching good creams to use to prevent the blistering on her cheeks.

It seemed to me an amusing right of passage that all tube feeding parents WILL accidentally feed the carpet or the wall at least 5 times per week.

Equally it was inevitable that you could leave a g-tube clamp open and give the cot a nice pump feed of formula… totally immersing your poor sleeping child in a huge puddle of milk!

Indeed an unexpected amount of slapstick comedy entered our lives as we began to tube feed.

In October Amy had gastrostomy and fundoplication surgery.

This was not a decision we took lightly but we knew it would be best for our little girl who had suffered terribly with gastro oesophageal reflux disease in spite of the copious quantities of anti reflux medication she was on.

Almost overnight she turned from a very irritable and inconsolable baby into a happy, interactive, interested, and relaxed, happy little girl.

It was like a dream come true, all those months of worrying we were doing something wrong seemed to diminish as we settled into this new world of easy living!

It soon became apparent that Amy couldn’t tolerate pump feeds very well.

We found ourselves very isolated with 10-12 hours of constant pump feeding per day and even then she would retch and need a lot of venting.

It was then that the wonder of Facebook introduced me to some forums about “blended diet”.

Before we knew it we had been bought an expensive blender by my parents, and we had a huge base recipe packed full of high calorie but wonderful foods for our daughter.

A kind lady spoke to me on the phone at length about how they did blended diet for their daughter and I was so anxious entering this new world of blended feeding!

I bought some books and read a lot of case studies to ensure Amy’s safety was held paramount.

The blended diet went so well for us, it gave us our lives back and we even got our lovely dietician on board!

Initially I was nervous as I have heard of parents get into altercations with their professionals about the blended diet as it is not currently NHS approved.

For us it was an obvious choice – through careful research and lots of guidance from others we had made it so Amy retched less, got REAL nutrition and not just chemicals, and more importantly… actually gain weight!

Sadly Amy’s fundo came loose when we were advised to try her on milk thickener and this caused her to vomit. We are currently awaiting a surgical review and have had to reduce the blended feeds a little.

I know a lot of people are discouraged from doing the blended diet but only you know your child and you know what is best.

I am so glad we listened to and followed our instincts and continue to fight for what is right for our little girl.

We are also very fortunate that we have such a dedicated and supportive group of specialists backing our decision. It has not been easy adjusting to life of no oral feeding.

Sometimes I do get very sad that we have been denied such a basic part of raising a child… the bribes of biscuits for peace, prizing toys out of your childs mouth, cleaning up thrown food from everywhere.

Whilst pregnant I constantly found myself thinking of breast feeding and eventually baking with my child and being cheeky and eating cakes together!

I realise now eating is not the be all and end all… We hope that one day Amy will be able to eat orally and work hard with our speech and language therapist to try and make this happen.

We are slowly but surely training up various family members so we can get a little extra support and everyone is doing fantastically.

But at the same time, our little girl is growing into a beautiful little monster and that’s all you can ask for.

We are so incredibly proud of our brave daughter for enduring so much pain and so many challenges, she is truly an inspiration to us all.

Space to Change Campaign Update

Two weeks ago I travelled to Manchester to meet the Clos-o-Mat team. Clos-o-Mat has installed 150 Changing Place facilities across the United Kingdom.

If you haven’t heard of a Changing Place toilet you really need to check them out.

Quite simply – they are perfect.

They meet the needs of people of all ages with profound and multiple learning difficulties as well as other medical and physical conditions.

They are a minimum of a 12 sqm space including a height adjustable changing bench, hoist, a centrally placed toilet and a privacy screen.

There are over 700 Changing Places across the UK.

In an ideal world, a Changing Place toilet would sit alongside every public toilet and be available in every public venue.

Unfortunately we don’t live in an ideal world and for now they don’t.

Space to Change is just a starting place to help make life that little bit easier for the Firefly Community.

It’s about being able to spend the whole day at your favourite venue, not having to pack towels, changing mats, anti-bacterial spray and nappy bags just to go for a coffee or to your local shops.

For the venues Space to Change is targeting a Changing Place facility might never be an option – they simply don’t have the space.

Other venues like shopping centres with almost half their units empty can’t make the substantial capital investment required to install a Changing Place facility.

That doesn’t mean they can’t or shouldn’t do anything to help support families who have young children with toileting needs.

Space to Change provides a viable alternative for small businesses who cater for families with younger children.

When I think of my own family situation we enjoy trips to our local farm, a visit to the soft play area or the play park.

These are places for families who have young children.

They are unlikely to ever have a Changing Place facility but they could quite easily provide one of the 3 Space to Change Levels.

Green – Private hygienic facility with large changing mat available

Orange – Adult length changing bench with safety barrier

Pink – Height adjustable changing bench with mobile hoist

For very small businesses and venues the Green Level might be the very best they can offer.

To receive a Space to Change award even at the Green Level, they must ensure their Space to Change facility is spotlessly clean, they must provide an anti-bacterial cleaner and a large changing mat together with slip-resistant flooring, tear off roll and a nappy bin.

The space must be large enough to accommodate the child, the carer and the child’s wheelchair in a private area.

If I know that somewhere will provide a Space to Change facility for me with my child today and that their staff will be understanding, helpful and accommodating – it will make things easier for us during this particular time in our lives.

I hope that the Space to Change campaign helps open up a conversation.

It gives businesses an opportunity to make immediate changes that can make a difference to families who have young children with toileting needs while they work towards the ultimate goal of a Changing Place facility.

A Changing Place facility for many venues is something to aspire to.

But for others, it could and should be a reality and as a Space to Change Champion I will always be encouraging them to aim for a Changing Places so they can properly accommodate every member of our community.

In the meantime I hope the short term gains that Space to Change makes for the Firefly Community will lead to long term changes in both attitudes and facilities for people with additional needs.

When People Do Not Believe the Diagnosis

It was so obvious that they had not explained their child’s symptoms to the doctor. They had not supplied documentation to the school staff.

They had not shared the testing results with their families. I was not about to make those mistakes.

When it came time for my son’s pre-school evaluation, I walked into the county office with a ream of paper.

I had downloaded and printed numerous articles from the PRISMS website.

PRISMS is the non-profit organization that helps families like ours.

Families who had children born with Smith-Magenis Syndrome (SMS), like my son Garrett.

SMS is so rare that most medical books do not have information about it so I printed articles about SMS behavior issues and the disturbed sleep cycle.

The authors of these articles were the professionals on the PRISMS Professional Advisory Board- researchers, doctors, genetic counselors, therapists.

I was prepared.

“I thought you were prepared?” my husband Charlie asked me that evening. “I WAS prepared!” I shot back at him. “I printed all those articles.” I started to cry again.

I was riding the train back and forth between anger and sadness—poor Charlie couldn’t keep up.

“Did you give them the articles?” he asked and patted me on the shoulder. “Of COURSE I gave them the articles!” I shot back again. “They didn’t even LOOK at them.” And I was back to crying.

“Did you tell them that the articles were written by Ann Smith and Ellen Magenis?” I looked up and he raised his hands. “Okay. Okay. You told them. Maybe you just weren’t all that clear about it.”

Yeah, maybe I wasn’t speaking English. Or maybe I gave them the impression that Garrett would no longer have SMS by the time school started in the fall.

Or maybe…I was starting to get that chip on my shoulder.

Charlie and I agreed that I would call the county office back in the morning. And I would calmly state our case.

“So…let me get this straight!” I shouted into the phone. “If I could PICK UP my house and MOVE IT five hundred yards to the right…this wouldn’t be a problem?”

I was not exactly calm.

“You do admit that’s what you’re telling me?” She wouldn’t admit it.

But it was true.

Our house was at the far north end of the village. Three doors down, the bus would pick up the students and take them to school. The bus would do that in the MORNING.

Our house was inside the village line. We had to go to AFTERNOON pre-school because we lived close enough to walk.

Afternoon pre-school began at noon. Garrett’s nap started at 12:30.

“Maybe you could keep Garrett up later at night. Then he would sleep in longer in the morning and not need to nap.”

Those were the words of wisdom from the school director.

I pointed to the sleep article written by Ann Smith. The SMITH of SMS clearly stated that there was a “chronic sleep debt” for Garrett that caused “excessive daytime sleepiness.”

“It doesn’t matter what time he goes to bed.” I told the self-appointed doctor. “His body releases melatonin at the wrong times. “He absolutely HAS to go down for a nap at noon.”

“He cannot nap in kindergarten or first grade,” she informed me.

But he did nap in grade school. The teacher had a quiet spot for him to go to, complete with a beanbag chair and blanket.

Even now, in high school, he needs to rest in the afternoon and he sometimes falls asleep. And Garrett attended morning pre-school.

When our geneticist’s letter of medical necessity arrived at the school director’s office, she was suddenly able to find a spot for him in the morning class.

It was a miracle.

Charlie and I were just so shocked that we had the information, from creditable sources, and the school authorities still would not listen.

I asked my friends if they ever felt judged over Smith-Magenis syndrome. “One time I was in a public place with my daughter and she was having a meltdown.”

Another SMS mom shared her story for this article. “I gently took her by the arm and she kept screaming while she walked out with me.

One of the patrons looked me straight in the eye and yelled, ‘Oh my God! She is abusing her!” That’s almost understandable.

It is something you would expect from strangers because you do not have a chance to tell them about the SMS diagnosis.

(Although PRISMS has compassion cards with SMS information to hand to strangers when you cannot stop in the middle of a meltdown and hold a SMS seminar!)

At least with friends and family, they do understand the struggles we face with our children.

“Not always.” The same SMS mom replied that even with a diagnosis, some still believe that they know more about our kids.

“My brother and sister-in-law used to tell me all the time that if I would just spank my daughter she would behave. Later they had two children without disabilities and they did not mind their parents any better.

Actually, my daughter with SMS was better behaved. It was such a good feeling.”

Okay. Strangers and uneducated family members do not get the concept of genetically driven behaviors and sleep issues. It’s hard, but I think I can deal with it.

At least when you go to medical appointments, the professionals understand.

Or, I thought the professionals understood and then I heard this story from another friend:

“Right after my two year old son was diagnosed with SMS we went to have a CT scan. The anesthesiologist asked why we were there.

I told her that he had just been diagnosed with Smith-Magenis syndrome.” “She literally looked right at me and asked if we got that diagnosis off the internet because SHE had never heard of it.

I said, ‘No. We got it from the genetic counselor that has an office two stories above us. Maybe you need to call her if you have any questions about the syndrome.’ What an idiot.”

I have to agree.

Strangers, family members, doctors and school officials…they all claim to have more knowledge about our children than we parents do.

That’s not a chip on our shoulders. It’s the weight of their ignorance.


(Not Such a Baby Anymore) Baby Wearing

We started out as a ‘normal’ new family and had all the ‘normal’ new baby stuff, including a high street baby carrier.

We lived in London at the time, so I quite quickly decided that ‘baby wearing’ was not only nice and snuggly for me and the baby, but so much more convenient for me than the pram for public transport around the city and for walking the dogs on the common.

One of Twinkle’s first ‘symptoms’ was developing reflux when she was still very small, so the baby carrier also became a useful tool, for holding her upright to help her digestion, and not just a means of getting around.

Despite being slim, she soon got too heavy for the carrier we had (it had no waist support), so I started baby carrier spotting and when I began googling them I found a whole new world I didn’t know existed!

From fully framed backpacks, through soft structured carriers, ring slings to more traditional wrapping with fabric!

So many options and lots of pretty colours and fabrics….wraps and carriers seem to be the new shoes and handbags in some households I think!

I have always been a bit daunted by tying a wrap (although I did, in the end, use a stretchy wrap for baby no 2), but I think by the time I was looking for a new carrier for Twinkle, wrapping wouldn’t have been right for her anyway.

I think wrapping (particularly for back carries) requires a degree of compliance and balance, even cooperation, from the little one which Twinkle couldn’t do (at 9 months, she wasn’t sitting unaided, and her hypotonia and hypermobility were beginning to become more apparent).

So after much googling and watching youtube tutorials, I was guided to investing in an SSC (soft structured carrier) – there are lots of fab brands out there, but I went for a Beco at the time.

I later learned of ‘sling meets’ and ‘sling libraries’ where I could have tried some out and got some experienced advice, however thankfully my online research held out and my SSC has been fab and I’m still using it for Twinkle’s little bro!

As Twinkle was growing out of this 2nd carrier, I thought that was probably it for our babywearing days, even although developmentally she could really have done with continuing.

I decided to do a bit of research into it anyway and was very pleasantly surprised to find that the ‘babywearing community’ is pretty open to carrying larger children of any ability.

Even when they can walk, all kids get tired and often want to be carried, so why not have a carrier or wrap to make it easier, rather than perching them on your hip or balancing them up on your shoulders.

I found there was a wealth of options to allow us to keep on carrying, and after some really helpful advice from some online SN forums, I went for both a ring sling (really useful for quick trips in and out of the car) and a pre-school SSC (a bigger version of what we already had), which is just perfect in size for our tall girl!

Twinkle is now 4 and still not walking (although she is beginning to take steps in her Firefly Upsee and her gait trainer!) and we now also have her 1-year-old little brother to factor into getting out and about!

Generally, Twinkle travels around in her SN buggy and I have little bro on my back in the smaller SSC.

However being able to continue the wearing experience for Twinkle has been just lovely, for various reasons:

 – It gives us some additional freedom as a family, to go on walks with the dogs, or into the city, that would be more tricky with the buggy;

– It gives Twinkle a different experience to that of being in the buggy, higher up for a different perspective on her environment, and allows her to experience things in the same way as her brother (that’s particularly nice for us at the moment as they are at a very similar development stage);

– Carrying is inevitable until/if we get to such a stage that we need to install a hoist/get a WAV, so having a carrier helps us with ‘manual handling’, spreading her weight and allowing me to maintain better posture;

– And last (but definitely not least!), it’s comforting to be carried, and lovely for mum and dad continue having those snuggly hugs as long as possible!

Pet Therapy as an Alternative Therapy

This week I will focus on Pet Therapy. Any feedback, questions and/or input is greatly appreciated!

What is Pet Therapy?

Pet therapy is a guided interaction between an individual and a trained animal. It also involves the animal’s handler.

The purpose of pet therapy is to help a patient recover from or cope with a health problem or a mental disorder.

Pet therapy also is called animal-assisted therapy (AAT). Dogs and cats are the animals most commonly used in pet therapy.

However, fish, guinea pigs, horses, and other animals that meet screening criteria can be used.

The type of animal chosen depends on the therapeutic goals of a patient’s treatment plan.

Who can use it?

Although all Children with Autism will exhibit different behaviours, there are many aspects of their lives that an Autism Assistance Dog can help with.

They are trained to meet the needs of both the child and the parents.

The new companion provides a steadying influence for the child, many of whom have a tendency to run off when scared, especially in strange locations. Our dogs are trained to prevent this.

Find out more about autism and dog therapy at http://www.adni.org.uk/dogs-and-puppies/autism-assistance-dogs/


Pet therapy builds on the pre-existing human-animal bond.

Thanks to this natural relationship, pet therapy can aid progress toward goals in human physical, social, emotional, and cognitive function

(American Veterinary Medical Association, 2013).

Pet therapy can be used in many different ways.

Goals of a pet therapy program can be to: ·

improve fine motor skills · improve assisted or independent movement · increase self-esteem · decrease anxiety or loneliness · increase verbal communication

· develop social skills · increase willingness to join in activities · improve interactions with others · motivate willingness to exercise


Prices for AAT vary depending on what animal you are requesting, however an approximate price is in the range of £125-£500.


Martin and colleagues (2002) found that children exhibited a more playful mood, were more focused, and were more aware of their social environments when in the presence of a therapy dog.

These findings indicate that interaction with dogs may have specific benefits for this population and suggest that animal-assisted therapy(AAT) maybe an appropriate form of therapy.


Martin, F., Farnum, J., 2002. Animal-Assisted Therapy for Children with Pervasive Developmental Disorders. Western Journal of Nursing Research, 24(6), pp. 657-670

If you have any questions relating to Pet Therapy I would be happy to try and answer your questions.