The Benefits of Animals

And Sam loves each and every one of them; he adores watching the colourful fish in their tank, stroking the cats and laughing at Sid’s comical strutting around the garden!

So, when a friend mentioned about taking their child who has severe CP horse riding and what a difference it made to her, my ears pricked up.

Although not very good at it, I used to ride in the past and still enjoy the company of horses so I started to research this potential activity for Sam.

I rapidly learnt that there is a form of physiotherapy done on horseback called hippotherapy, and that it can be very good indeed for kiddos with disabilities such as Sams. The main issue was availability.

We live in Stoke on Trent and while there are plenty of stables offering riding for the disabled, none offered the hippotherapy we were after.

After contacting many stables and being given contacts for OTHER stables I eventually spoke to a wonderful lady based in Shrewsbury.

Lyn was a physiotherapist who had specialised training in hippotherapy and was happy to give Sam a try out session, as long as we were happy to bring him down to Shropshire.

Frankly, I’d go to Mars and back if it would help my child… Shrewsbury not a problem!

On arrival the first thing we noticed was that we did not stick out as being the Family with the Disabled Child.

There were children with all manner of issues here, but all had one thing in common.

The moment they sat on one of the horses, they relaxed. They sat up tall, smiles across their faces.

Horses are remarkable creatures; big and heavy, they move with a quiet grace and would stop if they felt that the child wasn’t secure.

Each child was supported by two helpers, one either side of the horse who was gently led around the paddock by a third assistant.

Seeing the profound effect the animals had on these children made us all the more determined that we wanted Sam to try this out, so at the end of the session he was gently lifted on to a particularly gentle pony named Teddy.

Teddy stood patiently while the staff made sure Sam was lying comfortably across the his back – due to Sams low tone he is unable to sit unsupported, so lying on the horse allowed him to experience the therapy and relax.

Apparently when horses walk the movement is very similar to that of a human walking…

The child has to constantly alter their position subtly to maintain balance, the more experienced children work through various therapy programs involving them stretching their muscles and balancing on the horse without holding on; as this was Sams first time on a horse he was allowed to just chill out!

At the end of the ride, as Lyn lifted Sam off Teddy, the pony turned his head and gently nuzzelled our little boy as if to say hello properly.

Sam had a huge grin on his face, and we were hooked.

Sam has now been attending fortnightly hippotherapy sessions for over a year.

His core strength has improved significantly, as has his sit balance. Due to the unpredictable nature of his seizures and the frequency with which he experiences them he usually doesn’t ride the real ponies, but uses the stables fabulous mechanical horse.

This incredible piece of kit mimics the movement of a horse perfectly, allowing Sam to access the benefits of the therapy in a safe manner.

During his sessions his therapist will have him sitting or lying across the horse and uses various techniques to encourage him to use his own muscles.

A few weeks ago Sam was able to try out his new found strength and skills riding Teddy, the lovely pony who’d been so gentle with him on our first visit.

Let us just say there wasn’t a dry eye in the place as our little boy sat up straight and tall (granted, Lyn had a hand on his back but he did it!).

The difference in his strength was evident for all to see, as he watched Lyn tell him what she wanted him to do.

Proud mummy moment? You betcha.

Its hard work for the children, Sam usually falls asleep during the hours drive home, but the benefits to his overall development and well being have been fantastic.

Would we recommend hippotherapy? Absolutely and without a second’s hesitation.

A New Little Brother

We had always planned on having two children and as life is never simple (we had struggled with recurrent miscarriages pre-Twinkle and time was also running away from us as I was hurtling towards the big four oh!), so there was no time for worrying (well maybe a little bit of worrying)!

Twinkle’s underlying condition would appear to be a random quirk in genetics (as yet undiagnosed) so her geneticist felt it was unlikely to have been inherited and we were more easily able to put the genetics issues out of our minds, however we were apprehensive about how our new family would ‘work’.

Would it be fair on Twinkle?

Would it be fair on a new little one?

Could we give them both enough time and attention?

We decided to wait until after Twinkle had had her heart patch surgery, so 9 days after her 3rd birthday her little brother (Noodle) arrived!

Aside from the surgery, I think the age gap worked well as it gave us that bit longer with Twinkle as an only child.

Gave us time to get our heads around being a family with additional needs, make sure we had the right support in place for Twinkle, concentrate on her appointments and therapies and get her settled a few afternoons a week in a lovely local nursery.

Twinkle is very accepting of people, developmentally she’s not reached the possessive about mummy stage, so we knew the little dude wouldn’t cause jealousy and, right enough, for the first few months she didn’t really register him except if he was squawking too loudly or distracting mummy from sorting her out some food (she LOVEs eating!).

As the Noodle has grown, he has ramped up our pace of life into the fast lane!

Twinkle’s development has always meandered sedately along, always forwards but at her own pace giving us time to get used to new things, however the little dude (now 16 months) seems to have hurtled full pelt the whole way!!!

Life is very different now and it’s refreshing for us all having a funny, happy, cheeky, adventurous and communicative little person in the house.

A little bittersweet when he began to reach and pass some of the developmental milestones that Twinkle has struggled to get to.

Lovely too of course that he is not having to struggle in the same way and, of course it’s hard to pinpoint directly as there are so many factors stimulating development, I really think having Noodle around has made a huge difference for Twinkle’s development too – he interacts with her constantly, at the same level as her, moves around in a similar way, plays with her or parallel to her – no matter how hard you try as a grown up to encourage play/movement/communication, there’s nothing that can match another little person learning the same things!

Noodle is still so young that we’ve not had to address the issue of his sister being different.

Being the second child it’s all he’s ever known, so it’s just the way things are.

My nieces and nephews are beginning to be more curious about Twinkle’s abilities so I know that it’s only a matter of time before we get to that stage with him too.

I guess I’ll just have to play it by ear but I’m starting to gather any hints and tips people are able to pass on.

He’s a little bookworm so I think stories will be a great help – any recommendations would also be most welcome!

I do hope we can nurture an accepting little person.

We are trying to be as inclusive a family as possible from the beginning. Doing things together as much as we can, including Twinkle in activities that we do as a family and including the wee dude in Twinkle’s activities and therapies.

Twinkle being that little bit older and attending nursery part of the week, gives me some valuable one on one time with Noodle too, where we can connect with other little people of his age and get as wide an experience as possible for him.

Twinkle will be starting school in September, so I hope I can continue to strike a good balance of one on one time with me, socialisation and time spent with his sister.

When he is older I think it will be very important to maintain contact with support groups like SWAN UK and SIBS (www.sibs.org.uk), allowing us to meet up with other families and, more importantly, for Noodle to meet other siblings in other families a bit like ours!

There are Therapies… and Then There is Snowdrop

Sam was granted physiotherapy on the NHS for all of 12 months; once a fortnight. The reality being, that if PT was going to strengthen his muscles and keep his joints supple and mobile, this would be something he needed *daily*.

Cue the parents struggling to squeeze in one more round of therapy before school/tea/bedtime.

Why can’t therapy be more FUN??

Those who know me know that I am passionate about one particular therapy.

Snowdrop is different to other therapies; it is based strongly in scientific research, although at time the methods seem a bit, well, bonkers!

But first, some history… When Sam was around 14 months old he was virtually catatonic.

The seizures plus the powerful drugs used to try and control them were taking their toll and our boy could barely lift his head off the floor let alone don anything else.

Things were bleak and like most if not all SN mums I spent an alarming amount of time researching therapies, treatments, etc. ANYTHING that might help my boy, I looked into.

But I’m lucky, I’ve got insider knowledge…

I’m a scientist working in healthcare, so could identify which therapies were worth looking into which others were, well, not.

So, I trawled the scientific literature endlessly.

Then out of the blue, someone on another support group asked if anyone had tried the Snowdrop method… type type type into Google… and there it was. Snowdrop for brain injured children.

As I read I could feel myself getting excited – the therapy is based on what we have known for many decades; the brain doesn’t stop developing when we’re born but continues to form new connections between neurones and reinforce connections that are used repeatedly.

The posh term is neuroplasticity and it’s how we learn. So all the people telling parents that a child’s brain was damaged/malformed therefore they would never develop were inherently WRONG.

An email was sent off to Snowdrop that evening. And in the morning, a reply!

At this time we had no idea why Sams brain was misfiring so spectacularly; all we knew was that his prognosis was gruesome; lifelong seizures, severe learning disability, likely autism, severe visual and auditory impairment due to seizure activity.

What did we have to lose?!

So, when Sam was 18 months old we packed the car and drove down to the other end of the UK to Devon, to meet with the founder of Snowdrop, Andrew and his wife Janet.

That first meeting changed everything.

You know that horrible feeling when you go into an appointment with your child, they’re poked and prodded, lots of tuts are made, then the Dr proclaims that there is little/no hope or that the issues aren’t treatable?

Now imagine the opposite. Andrew watched Sam, intently from the moment we entered the room.

He assessed Sam as a child, not a collection of symptoms, and watched everything he did, how he responded to different stimuli and people.

He explained everything as he went along.

Eventually, he sat down with us and explained that our little guy wasn’t sensing the world as he should be – he could barely feel anything on his arms yet his feet were exceptionally sensitive to touch, to the point that it could be painful for him.

He was displaying a lot of newborn-type reflexes and was hypersensitive to sound in the range of the human voice – he literally switched off when we talked to him as it was uncomfortable for him to listen.

Andrew was excited by Sams potential and couldn’t wait to get started working with him – most therapist were doom and gloom, this was entirely new to us!

We left that meeting exciting and for the first time since the Sams nightmare began, we had hope for his future.

We’ve now been following the Snowdrop program for over 2 years.

In that time the following has happened; Sam has regained purposeful vision (something the opthalmology team couldn’t believe until they saw it for themselves), his hearing has pretty much normalised and he understand basic instructions; his tactile sensitivities have completely gone and he now feels the world as he should do.

He is no longer a catatonic child, unable to coordinate the simplest of movements – he has finally gained head control!

He can roll over, both ways, can kick, pull and push. He is learning to sit up and develop a sit balance. He is trying to stand.

Far from being non-interactive, he is a monkey who loves to play with Mummy and Daddy, and who thinks the cats tail is the best toy in the world.

Ever.

His eyes sparkle now as he realises how much world there is to discover… his neurologists eyes filled up when he saw Sam playing with his Dad, giggling like a loon as Daddy tickled him.

This man has been with us since the very start of the seizure Hell, and knew how horrifying the prognosis could be, in his words he was watching a miracle take place.

Snowdrop is not a cure all, nor a guarantee of success.

We simply don’t understand enough about the brain, and there will always be children who don’t respond or do so more slowly that we’d hope.

What it IS is a way that we as parents can harness our childs natural abilities to remould the brain and work around damage/problem areas.

Sam can’t crawl, but he’s worked out how to wriggle his way across the floor to where he wants to go.

It isn’t exactly coordinated yet, but its coming.

Andrew and Jan have had first hand experience of SN; the charity was set up as a legacy to their eldest son Daniel who passed away in his teens as a result of devastating brain injuries sustained at birth.

They have an empathy with SN parents, and understand how desperate we can be to help our children; each childs program of activities is designed for THEM and involves stimulating the areas of the brain which are not functioning as they should be.

It is a case of repetition to form new brain pathways, like learning to play an instrument… the more you practice, the better you become.

In the same way, we aim to do Sams entire series of exercises 4 times every day; each exercise takes a few minutes only and can be fitted in around our other activities.. although it took a while to get into the swing of things, its now second nature to do a couple of bits in the morning before school, then another couple when he comes home again.

He has a therapy CD to listen to, 20 minutes at a time.

Andrew and Jan are always there, supporting, encouraging, tweaking programs for each child as that child progresses.

They remind us that child development is not a set series of stages but a continuous process… in Sams case his motor skills are profoundly delayed – but in order for him to gain motor control, first he needs to get his tactile perception sorted, then he needs to understand how his joints move, THEN he can start to try and control his movement on the floor (wriggling, kicking etc).

And only once those building blocks are in place can the bigger changes start to occur.

It will take years of intensive therapy to overcome Sams difficulties and we have no way of knowing how far he can go but we’re not going to stop trying!

Honestly, I’d recommend it to anyone and everyone…. After all, what have we got to lose? X

Snowdrop Therapy

Through Daniel, Andrew became fascinated with neuroscience and child development, studying at various universities.

He gained various qualifications in ‘Psychology, Neurophysiology and Child Development’, ‘Social Science’, ‘Professional Studies in Education’, ‘Language and Communication Impairments in Children’ and ‘Neuroscience and Child Development’.

Snowdrop began following treatment of two children.

The success they achieved resulted in other children finding their way to Snowdrop.

Today, 75% of children attending the Snowdrop programme are UK based, but there are other children attending from the USA, Canada, Australia, New Zealand, India, Romania, Sweden, Nigeria, South Africa and many more places.

In 2012, Snowdrop became a charity as a result of increased demand for their services.

What conditions are suitable? Conditions suitable for the programme include, but are not limited to; ADHD, Autism, Cerebral Palsy, Developmental Delay, Dyspraxia, Genetic Disorders, Learning Difficulties and Pervasive Developmental Disorder.

The Programme

The programme is built around the latest knowledge of how brain plasticity (the ability of the brain to change its structure and functioning in response to demand from the environment) responds to environmental stimulation and how that knowledge relates with how developmental processes proceed in the child.

The combination of these two strands of knowledge is used to stimulate the child’s development in all areas.

The programme begins with evaluation of the child’s functional capability in all areas of development – sensory, gross motor, fine motor, social, language and communication and cognition.

Once a ‘baseline’ of the child’s abilities in each area of development and an intimate understanding of his / her difficulties has been established, a series of activities is developed.

These are designed to stimulate the child to achieve the next higher level in each developmental area.

The implementation of these activities and recommendations will create a new developmental environment for the child.

Distance advice is provided for international clients and children who are unable to attend the clinic due to the nature and severity of their condition.

Assessment Process

(1). Once you make a request for an appointment, you will be sent a health questionnaire to complete and return at your leisure.

(2). You will then attend an appointment for a consultation in Devon.

(3). At the consultation, you will have the opportunity to discuss any issues concerning your child’s development.

(4). Challenges faced by your child and ideas concerning how their problems should be addressed are discussed.

You will have the opportunity to ask questions at any time.

(5). The practicalities of implementing a programme are then explored. – Such issues as how much time the family can commit and any other constraints on implementing the programme.

(6). Parents do not receive a programme on the day of our appointment. Over the proceeding days, all information is considered and collated. When this consideration is complete, the child’s programme of developmental activities is designed.

(7). Once you have received your programme (or distance programme), which will contain detailed instructions of how to carry out the developmental exercises prescribed, Snowdrop remain in close contact to ensure that you feel confident in carrying out the activities.

(8). Snowdrop remain in frequent contact to monitor progress and help guide you through difficulties which may arise.

The Distance Programme

Due to an increasing number of requests and in recognition of the fact that many families are unable to travel vast distances in order to obtain treatment for their child, whether due to practical constraints, financial constraints, or other reasons, the ‘distance programme’ is offered.

It has proven to be effective and children have made progress as a result of it.

The distance programme works in the following way: If a parent were interested in using Snowdrop’s services but felt unable to attend a conventional consultation in the UK, they should write or send an email, briefly outlining their child’s condition.

The parent is then asked to fill out a detailed developmental questionnaire which is then analysed y Snowdrop.

Video footage of various aspects of a child’s developmental function is also requested.

Once Snowdrop feel they have achieved a good understanding of the child’s difficulties, a programme of developmental activities is devised.

It is stressed that it is then the responsibility of the parents to gain approval for the programme from their child’s doctor, so that he may suggest amendments to the suggested activities in light of any medical problems the child may have.

It is also stressed that the preferable option is to attend a full developmental evaluation in the UK, however it is appreciated that parents may find that the option of a ‘distance programme’ makes treatment more accessible to them.

Cost

An initial assessment will cost £300, with follow up assessments every four to five months costing £250.

For international customers who cannot come to the centre and consequently seek distance advice, the cost is the same.

Research

Research on Snowdrop programme’s effectiveness, as well as research on brain plasticity, can be found on the charity’s website (http://www.snowdrop.cc/).

Contact Address: Snowdrop, Unit 2, Halthaies Workshops, Bradninch, Devon, EX5 4LQ Tel: Internationally +44 1392 881 939 From the UK 01392 881939 Email: [email protected]

Keeping Friends After the Diagnosis

My pregnancy and Garrett’s birth were not out of the ordinary.

Around the age of six months, Garrett failed to reach developmental milestones.

At nine months, our pediatrician referred him to a physical therapist, but I was not worried.

I just assumed that he had inherited my athletic prowess.

Around the same time, my friend Jill was growing concerned about her daughter, Leah. Leah was a year older than Garrett and she still was not talking.

She was also very tiny and not gaining much weight. Leah was Jill’s second daughter, so she didn’t have my blissful ignorance to hide behind.

One Sunday morning, we were catching up at church.

Leah had grown several inches, gained weight and was talking like a typical toddler.

“It’s been since her surgery,” Jill told me. “Once she had her tonsils and adenoids removed, she was like a different child.”

“We are taking Garrett to the Ear Nose and Throat specialist,” I informed my husband, Charlie.

We were both getting aggravated at Garrett’s repeated ear infections and our pediatrician’s lack of concern about it.

Garrett also was not sleeping. EVER!

It’s a classic symptom of SMS, but we were convinced he had sleep apnea.

I made an appointment with the ENT behind our pediatrician’s back.

He was adamant that we wait for Garrett to “outgrow” the ear infections, but the ENT agreed with me and Charlie.

We scheduled the surgery to have ear tubes (grommets) inserted and tonsils/adenoids removed.

Six weeks later, our new pediatrician diagnosed Garrett with Smith-Magenis syndrome.

“I really thought the chronic ear infections caused his delays.”

I keep repeating this to anyone who would listen. “Garrett took his first steps two days after the surgery.”

Very wobbly, and nothing like the first steps I would later witness with his brothers.

“He is eating better and not choking on his food.” Well, not as often. “He is sleeping better, too.”

But not as much as a toddler should have been sleeping.

For eighteen months, I was able to pretend his delays were “not that bad.” Even after the diagnosis, a part of me thought the test was wrong.

But, as Leah and the other kids at church grew, Garrett’s delays became more obvious. He didn’t speak until his was six years old.

He wore a diaper until he was in middle school. But, the hardest part was his loud, crying tantrums that would go on for hours.

He cried when the organ started playing. He cried when I read along with the prayers. He cried when everyone stood up.

He cried the whole entire service.

Fortunately for our family, Garrett was always accepted and invited to be a part of the activities: Christmas Pageant, Vacation Bible School, and Sunday School.

I have heard terribly sad stories from many of my SMS mom friends about how their children were asked to leave church until they could “learn to do better.”

We didn’t hear that from anyone…family or friends.

But, I could still feel myself pulling away from those I knew BD. It was just so much easier to be with other special needs families.

I felt more comfortable around them.

I felt more comfortable with people that I had just met than I did those lifelong friends from MY nursery school days.

I couldn’t understand it myself. No one said the wrong thing. No one did the wrong thing.

Their only crime was living the life I had imagined. When I was in their company, I was reminded of the dreams I once had for Garrett.

For my own sanity, I had to shut my curtains and create a world that was less painful.

For me.

_____________________________________________________________________________________

Today, two girls from the middle school came down and asked if anyone in our class wanted to be in their talent show dance.

Garrett’s teacher sent a note home when he was in the 5th grade. Garrett said he wanted to, so I let him go to the gym with them and Connie.

Connie was Garrett’s aide and she could get him to do anything.

Anything.

Please sign the permission slip and return to school. “I don’t think this a good idea.”

I read the note to Charlie. “You know how Garrett cries over loud music. And the talent show doesn’t start until the evening. He’ll fall asleep backstage waiting for his turn. I can see him having a meltdown in front of the whole school.”

“Let him try it,” Charlie didn’t agree with me. “You know he’ll do anything for the ladies.” That was true.

Garrett was a typical pre-teen boy in some ways, especially when it came to girls.

And Connie had volunteered to stay with Garrett and his classmates backstage.

Waiting can be very difficult for Garrett.

“What size shirt does Garrett wear?” Jill called me out of the blue. “Why?” “Leah and her friend have asked Garrett’s class to be in the talent show. The rest is a surprise. Don’t ask me anything else.”

When the night finally arrived, I was a nervous wreck.

Connie met us at the school door so I could drop Garrett off and drive away. Just seeing me walk into “his” school can be enough to cause Garrett’s behaviors to escalate.

I did not want to take any chances. I waited in the packed gym without any idea of how Garrett was doing backstage. Their dance was the third or fourth act, which is an eternity in “Garrett Time.”

Finally, it was his turn.

The music started and it was loud. I held my breath. Made a wrong turn once or twice.

Pink’s voice filled the gymnasium. Mistreated. Garrett’s classmate, Matt, jumped out from behind the curtain on the left.

There was no doubt he was ready to dance!

Misplaced, misunderstood.

Garrett walked out from the right, behind his other classmate, Katie. Mistaken, always second guessing.

Leah stood next to him and started a slow clap. Garrett watched her and copied her moves.

Underestimated, look I’m still around. Underestimated. I couldn’t hold back my tears.

Underestimated.

Not only did I underestimate Garrett. I had underestimated Leah.

I had spent too much time in my own grief that I had not noticed how amazingly well Leah and the other children had accepted Garrett. Pretty, pretty please…

The group on stage moved their arms up and jumped completely around, in a coordinated move.

Don’t you ever, ever feel. Like you’re less than, less than perfect. It was the clean version. This was a family event, after all. Like you’re nothing.

You are perfect to me.

It was then that I noticed the shirts. Jill had bought blue t-shirts for Matt and Garrett. Katie, Leah and Leah’s friend, Jordin, were dressed in pink t-shirts.

All five shirts had the word PERFECT spelled out across, in bold white letters. You’re so mean, when you talk. Jordin spun Matt around in a vaguely familiar square dance move.

Leah took Garrett’s and Katie’s hands for a double spin.

I could not believe that Garrett was able to remember so many moves. About yourself.

Leah pointed at Katie and Garrett. Garrett pointed at himself and grinned like he was so proud. He absolutely loved being on that stage!

And I had considered making him miss this moment.

For fear he could not do it.

For fear of a meltdown.

For fear of being reminded…again…how different he was from his peers.

Those peers jumped and cheered when the song was over. A standing ovation. Garrett bowed. Several times.

Garrett was perfect.

As perfect as his four friends up on that stage…especially the two middle school girls who reminded me how sweet and wonderful these long awaited moments are if you don’t let them pass you by.

What I Want the World to Know in Honor of Autism Awareness Month

I want the world to know that being the mother of a daughter with autism comes with unspeakable joys as she acquires skills and accomplishes achievements that I never dreamed possible.

I want the world to know that my daughter as well as all others with autism are not a burden on their loved ones or on society.

I want the world to know about and appreciate all the incredibly, unique, and extraordinary talents, gifts, opinions, and points of view that people diagnosed with autism have to offer the rest us.

I want the world to know that children who have autism will grow up to be productive, contributing members of society and assets to the communities in which they will someday work and live.

• One in sixty eight people have been diagnosed with autism in the United States.

• There are more than 3.5 million Americans living with an autism spectrum disorder.

• One percent of the population in the UK has an autism diagnosis.

• Once percent of the entire world’s population has autism.

I want the world to know that people with autism are not going to go away.

They will continue to come out and the world needs to be prepared to the completely, totally, and unconditionally accept, fully include, and welcome them into its communities.

I challenge you to get to know a family or an individual affected by autism and see how you can help them change the world.

When Did Life Get So Complicated?! Cars, Motability and General Ramblings…

So far this week we’ve bought a new house, agreed to rent our current one out / changed our minds and think we’ll try to sell it again before we move / decided to rent it out again, signed the paper work for the new WAV to make travelling easier on us all, and I’ve taken delivery of a new piece of equipment for my craft/jewellery work.

My brain really, really hurts.

Sam seems to know this, and therefore feels that what Mummy needs is to be kept awake all night so she doesn’t have to worry in her sleep.

Gaaaah. Pre-Sam, buying a car was also a simple affair of how much can we afford then finding a car that fit the bill within our price range.

Since Sam, such mundanity is long gone… I think we’ve test driven more vehicles in the past 6 months than I have in over 15 years!

The new car needs to be wheelchair accessible – we originally thought we could get away with a normal car and put his wheelchair in the boot… then he got a new wheelchair that doesn’t fold down so much.

Cue rethink.

We were introduced to the lovely people at Motability, without whom I can safely say I would have lost my mind months ago, and who gently guided us through the process and yet I still manage to get confused; by being on the scheme, we in effect sacrifice Sams mobility component of the DLA so it goes directly to the motability charity.

In exchange, we get a brand new car every 3 years (5 for WAVs), and our insurance and breakdown cover are included.

It took a lot of number crunching but in the end we worked out that it would save us a LOT of money over the course of 12 months.

Not to mention the reduction in strain on our aging bodies… Sam is 3 and tall.

Very tall. And very floppy due to low muscle tone. Getting him into his car seat has become more and more difficult as he’s grown bigger and, frankly, it isn’t very dignified having your Mother hoik you up by your pants and in effect drop you in a chair, only then to wiggle your bottom back into the seat and straighten you up so you’re in the right position to do up the straps!

Poor mite.

So, early last year we decided that once he got high rate mobility as part of his DLA (when he turned 3) we’d apply for a wheelchair accessible vehicle for him.

I have to say, the process has been relatively straight forward but the financial side of things scares me.

Sam has a lot of equipment we have to transport with us – oxygen, suction machine, specialist chair, standing frame – and come June 2015 we’re getting a puppy to begin seizure alert dog training, so a dog crate also needs to fit in.

All of this means that a standard Citroen Berlingo or similar simply won’t be big enough to accommodate all his STUFF.

And that pushes the cost up through the roof.

After trying various vehicles we settled on a VW caddy 4life; Sams wheelchair sits in between the two passenger seats at the back, so its easy to reach him in an emergency and get his oxygen on him, he loved how smooth the ride was in the 4life and really loved the view he gets through the front windscreen!

The only issue is the £6500 advance payment we need to find.

A lot of people we’ve spoken to have cheerfully informed us that we’ve so lucky because we can get a brand new car for free… and it tests my patience every time as I smile sweetly and explain that while that may be the case if you don’t need major adaptations to the vehicle, if you do then you still have to pay *something* towards the cost of those adaptations.

Adapting a vehicle to take a wheelchair isn’t just a case of removing a seat in the back and adding securing straps – the car needs reinforcing underneath to support the wheelchairs weight, suspension needs to be tweaked to ensure a comfortable ride, and winches need to be considered as some of the wheelchairs out there are really heavy.

Motability DO have a grant scheme which we’re applying to, but we’re pretty sure our income will mean we won’t be able to get much if any help.

Still, this is something that will have a huge impact on all of us so we don’t really have a choice in the matter – paper work was signed on Monday, and the 4life should be with us in around 2-3 months 🙂

Learning to Live With my Child’s Chronic Illness

Life seemed to stand still when Bethany was first diagnosed.

It really bugged me that all around me family, friends, and strangers were scurrying about, carrying on with their lives as usual.

Didn’t they know that there were seriously ill children in the world?

How dare they!

I’d sadly and wearily peer out of our hospital room window, watching the cars and trucks speeding down the highway in the distance.

I’d see people walking down the sidewalks, living their lives as usual and wonder why this horrible thing was happening to my precious baby girl.

Of course, being shut up and isolated in a hospital room, exisiting on little to no sleep, and having no one to talk to except doctors and nurses for months on end only served to exacerbate the issue.

After Bethany finally became well enough to go home, I assumed life would eventually return to normal.

But how could it really?

My daughter was permanently disabled. Life would never return to normal, but we would eventually find and begin to function within the parameters of a new normal.

I recall thinking how ridiculous my friends and family were to complain and argue about such trivial, and meaningless issues as what color paper plates to use for Thanksgiving Dinner, whether so and so’s dress was too revealing, or how terrible their child’s runny nose was.

Their problems were nothing compared to ours.

My daughter was experiencing excrutiating pain, nearly dying every day from some new and rare complication associated with brain tumor surgery, having near constant seizures, and learning to adjust to a new way of life as a person with disabilities.

While I can’t tell you that I never get jealous of healthy families any more, I can say that eventually life did begin to settle down a bit.

We grew accustomed our new rhythm and adjusted to our new roles within the family. We developed a routine that worked for us. This change didn’t just happen overnight though.

Each one in our family had to work long and hard to achieve our own semblance of peace with what had happened to us.

Some of the things we did to find that peace were as follows:

• We attended support group meetings. Talking through issues with others who understood what we were going through and knew exactly how we felt was very helpful in the healing process.

• We educated ourselves and our other children about our daughter’s condition. We learned how we could best help her reach her potential and live a happy fulfilling life.

• We sought both practical and financial help from agencies for the disabled.

This help included service coordination, respite care, therapies, and specialist consultations for our daughter, medical assistance, and special equipment such as a wheel chair and iPad, and even sign language classes.

But what really helped me personally get over my feelings of jealousy or that no one elses crisis could possibly be worse than ours was one day just realizing that even though someone elses crisis may seem trivial or even ridiculous to me, theirs is just as devastating and traumatic to them as my daughter’s chronic condition is to me.

It wasn’t until I was able to be compassionate, kind, and understanding to others facing problems in their lives that I was able to get over myself, and stop feeling superior because of going through such a catastrophic experience that I was finally able to come to peace with our new normal!

Taking Better Care of My Back (and me!)

She has recently started doing a sort of stylized bum shuffle/bunny hop technique to get across the floor (very exciting for us as it took her a long, long time to develop the motivation to move herself forwards!).

Although she can weigh bear in a standing position pretty well she has only just started taking a few (supported) steps, so is quite a long way from walking – if ever.

Therefore my day involves a lot of lifting, carrying and transfers from floor to chair, in and out of the bath and cotbed, sitting on the floor, crouching down and generally getting into awkward positions to help with her physio and mobility needs.

I’ve always had dodgy posture and a bit of a tendency to lower back pain, but I’ve been noticing the strain much more recently and it has given me a bit of a wake up call.

It’s so easy to ignore your own aches and pains and problems as the children are the priority but, as my husband works long hours, I am on my own with the wee ones most days from morning until bedtime – so if my body packs in our family really would be struggling!

With that in mind, my new year’s resolution was to start yoga and try to improve my core strength and posture….

And (a big surprise to myself!) I actually did join a studio!

I have so far managed to go along once a week (well ok, I have missed a couple of weeks – but I still think I’m doing pretty well!).

It feels very reassuring to be doing something which will help my posture and hopefully protect my back.

As an added bonus, I also get a little bit of ‘me time’ and some extremely useful tips on relaxation techniques.

Life with small children can be pretty stressful and chaotic at the best of times, but with additional needs in the mix – appointments and therapy ‘homework’ to squeeze into our day – it can be extra stressful!

In fact before each class, as I’ve run around trying to get the kids sorted and into bed in order to run out as soon as Dad comes through the door from work, I wonder if it’s actually worth the hassle and if I’m just cancelling out any benefits I might get from the relaxation elements!

So far thankfully not, although I can’t say my mind doesn’t sometimes wander back to random thoughts about home as I’m lying there in the studio….!