Special Needs Family Fun: Keeping Disabled Children Safe in Warm Weather

Summer temperatures in the UK can be a health risk with vulnerable people including disabled children being most affected by periods of warm weather.

The following tips will help you keep your family stay safe in hot weather:

Avoid Dehydration It is extremely important that you make sure your child is kept suitably hydrated during warm weather. Dehydration can cause significant health problems and in extreme cases even death.

All children but especially those with special needs are at risk because they may not recognise that they are overheating or becoming dehydrated or communicate to you that they are feeling unwell.

Make sure your child drinks at least every 20 minutes, water or well diluted fruit juice is best. Drinks at a moderate temperature are better than those that are ice cold. Avoid drinks with caffeine.

Try making some homemade ice-lollies if you are struggling to get your child to drink regularly.

Limit activities like physiotherapy to the cooler parts of the day.

Avoid heavy foods and include plenty of fruit and salad in your child’s diet (if you can).

Always take plenty of drinks with you when you are out and about.

If your child is tube fed, take advice from your feeding specialist on how to meet their hydration needs during warm weather.

Watch out for signs of dehydration: particularly for muscle cramps in the arms, legs or stomach, mild confusion, weakness or sleep problems.

Sun Safety

Keep your child out of the sun as much as possible, especially when it is at it’s highest between 11am and 3pm. Babies under the age of 6 months should be kept out of direct sunlight altogether as their skin contains too little melanin, which is the pigment that gives skin, hair and eyes their colour and provides some protection from the sun.

If your child is in a special needs buggy or wheelchair use a parasol to keep them shaded.

Dress your child in loose fitting clothing such as cotton so sweat can evaporate. Make sure your child wears a sun hat with a wide brim or long flap at the back to protect their head and neck.

Use a high factor sun cream on the whole family – using a minimum of SPF 15 making sure it has UVA and UVB protection and is water resistant if playing in water. Apply the sun cream regularly especially if your child is in and out of water paying particular attention to shoulders, nose, ears, cheeks and tops of feet. Always reapply after towelling down your child.

Protect your child’s eyes with sunglasses that meet the British Standard (BSEN 1836:2005) and carry the “CE” mark (check the label or ask the manufacturer).

Remember sitting in the shade or using a sun parasol or umbrella does not offer total sun protection and children can still burn if sun cream is not applied.

Keeping Cool Many prescription medicines can reduce the tolerance of heat so you may need to take extra care to keep your child cool.

Stock up on supplies like medicine, food and drinks so you don’t have to go out in the heat.

Keep your home cool – shutting windows when it is hotter outside than it is inside can help. Remember to open the windows later in the evening when it becomes cooler. Closing blinds and curtains in rooms that get the sun can also help.

Leaving bottles of iced water in rooms can help bring down the room temperature during the night as they defrost.

Turn off non essential lights and electric equipment as they generate heat.

A paddling pool is a great way to keep babies and young children cool. Keep the pool in the shade and supervise children at all times. Or place a cool cloth on your child’s neck or sprinkle water over the face, hands and feet.

Plan a cool bath before bedtime.

Keep nightwear and bedclothes to a minimum.

Use a thermometer to check the temperature of your child’s room – a room temperature of 16°C (61°F) and 20°C (68°F) is ideal.

Electric fans may provide some relief, if temperatures are below 35°C. At temperatures above 35°C fans may not prevent heat related illness and may cause dehydration. Do not aim the fan directly on the body.

Watch out for the signs of heat exhaustion: including headaches, dizziness, nausea or vomiting, pale skin, heavy sweating and a high temperature.

Heatstroke can develop if heat exhaustion if left untreated – but it can also develop suddenly and without warning.

The symptoms of heatstroke include hot and red skin, headaches, nausea, intense thirst, raised temperature, confusion, aggression and loss of consciousness.

Heatstroke is a life-threatening condition.

Remember to keep an eye on the weather forecast so you can plan ahead!

Special Needs Fundraising Top Tips

There are many cute little toddler beds with side rails on the market for under £150, but my daughter’s special one with high sides costs more than ten times that amount.

I understand that thankfully there are less disabled children needing this equipment than children who don’t and therefore we are not benefiting from mass market discounts.

It hurts though, because families with disabled children have enough on their plate to deal with.

Before having my daughter and being catapulted into the world of special needs, I used to fundraise as part of my work.

In fact I’ve now had so many jobs that involved fundraising, from Probation Services to Museum Curator and many in between that I have become quite experienced in it.

It’s a skill that I decided to turn to when faced with escalating costs for equipment that neither Social Services nor the NHS would fund.

To my delight, it turns out that the same approach works whether you are fundraising for a new museum building or a special needs trike, you just need to follow a few basic principles to increase your chances of success.

So if you are up for the challenge, because it does take time, persistence and a bit of effort, here are my top 10 tips:

1. Accept from the start that Charities are there to help you and they need people like you to help, therefore you are an equal part of the relationship.

They operate as businesses, employ (and often pay) staff and need applicants to fulfil their role so please get over the fear or stigma of ‘hand outs’ as it’s just not like that.

2. There are literally thousands of charities out there for all sorts of needs and conditions. Find those that meet your requirements and you theirs.

For instance if your child has a specific condition, find the charities that fund that. You may also be a suitable applicant because of your location or even job.

There are charities for ex-service personnel, people from different industries or even relatives of people that worked in specific jobs.

3. Some but not all charities will fund 100% of the amount you need. Some charities maintain ownership of equipment that they fund for you. Some have household income limits that they will support. Do your research!

4. Once you have shortlisted charities that A. fund what you want B. you meet their funding criteria & C. they are Currently funding what you want to apply for, then and ONLY then make your application.

5. Consider applying to two or three different charities at the same time. When one offers you a grant, tell the others immediately. Have a back up wish list of items in case one of the other charities still wants to help you (it honestly does happen!)

6. You are in competition with thousands of other families all asking for grants or support. You need to stand out from the rest. Here’s how to do it:

Consider including a picture and small description of your child, their needs, their likes/dislikes, what makes them happy.

Tell the charity (spell it out for them) what difference their help will make to your child.

What impact will this have on the whole family? What will the grant be able to help you do as a family?

How long/often will the grant be used for? (i.e if equipment how often used)

7. If you get a ‘No’ don’t be too upset, you can ask for feedback to help with future applications, and remember just how competitive it is. Don’t give up!

8. Hopefully you will get a ‘Yes’! When you do, thank the charity by email, writing or phone.

If you are happy to, send them a photo of your child using the new equipment or holiday or whatever the funding was for and tell them if they can use it in their marketing.

Charities work hard to raise money for families and this will help them to do so, in turn helping others in the future too!

9. Once you have built a ‘relationship’ with a charity, don’t be afraid to contact them again if you need more help in the future.

Family Fund encourages people to apply once a year after their initial grant as they understand the need for support is ongoing.

10. Good luck!

Special Needs Fundraising: Make-A-Wish Foundation (UK)

​Since its beginning in 1986, the Make-A-Wish Foundation has granted over 9,000 wishes to seriously ill children and young people.

A ‘Wish’ is an opportunity for seriously ill children to enjoy extraordinary experiences, something they only thought possible in their dreams.

It’s an individual and memorable experience for each child.

Make-A-Wish Foundation has specific criteria for Wish granting.

Children need to be UK residents aged between 3 and 17 years old.

They can not have received a Wish from Make-A-Wish previously or any other wish-granting organisation.

The charity will speak to the child’s Paediatrician to confirm that his or her condition is considered life-threatening.

Make-A-Wish accept referrals from parents and guardians and medical professionals.

They also accept referrals from the children themselves.

If you would like to refer your child or a child you know you are encouraged to complete and return the Make-A-Wish referral form.

The child’s parents or guardians will be required to sign the medical release form allowing Make-A-Wish to write to the child’s medical professional.

Once the charity has spoken to the child’s medical professional to confirm that the condition is life-threatening then a form will be sent to the child’s family to gather more information.

When this form has been returned a specially trained volunteer will visit the family to find out more about the child’s ‘Wish’.

Wishes are limited to within Europe.

Make-A-Wish has granted an amazing array of wishes including meeting Messi, becoming a Zoo Keeper for the day, going to the Grand Prix, holidays and specialist equipment.

To find out more about Make-A-Wish visit the website here.

Dear Smith-Magenis Syndrome

It looked like a partying kind of acronym. Not scary at all.

A few years later, the pediatrician escorted my husband and me into the “Disney Room” at his office complex. Naturally, I assumed we were invited to a party. Until he handed us the worst party favor, ever….our son’s genetic test results.

This time, the SMS was short for “Smith-Magenis Syndrome.”

There was no confetti. You were the scariest acronym I ever saw. I would never dance again.

At first, I didn’t want anyone to know about you. You were not going to define us. And it worked so well that you had to rear your ugly head.

You showed yourself in his walk: a strange, wide gait.

You showed yourself in his speech delay: he talked with his hands. You showed yourself in his low muscle tone: he could not color or use scissors.

But most blatantly, you showed yourself in his behaviors. And we could not hide. Not even a little bit. Who could miss the little boy slapping his head and biting his hands?

Even after all of that, you would not let him feel relief. Nope.

You had to take it up a notch. He hit me. He hit his brothers. He hit strangers.

He threw his toys. Or his sippy cup. Or his shoes. He screamed. He slammed his head into any hard surface he could reach: the side of his stroller, the floor, the wall. You were in total control. I had none.

Worse yet, my little boy had no control.

So we had to reach out. To professionals: therapists, doctors and specialists. To educators: administrators, teachers and aides. To other families: special needs groups in our town and the international SMS support group, PRISMS.

Soon, I started rubbing elbows with the famous SMS names, like Dr. Elsea, the discoverer of the gene that causes SMS by mutation or deletion.

And I got to meet the researchers named Smith AND Magenis. In person! And they were kind. And they were caring. And listening to what I had to say.

When Dr. Magenis passed away last year, my husband and I truly felt as if we had lost a member of our family.

That’s just how much we love these researchers. And I will admit, I brag to my friends about how I know these amazing people. Like a groupie hanging onto the bumper of a tour bus, I drop their names: Ann Smith, Ellen Magenis and Sarah Elsea. That’s right. They are women!

I love that the doctors in control of your story are also mothers.

Somehow, that makes me feel stronger. And I am stronger when I talk to the mom who helped establish our support group PRISMS, the SMS moms who serve on the Board of Directors and the women on the Professional Advisory Board.

And I am stronger because of the women who organize the bi-annual PRISMS International Conference and the moms who present sessions; actual SMS lifelines that have guided me through my son’s first 15 years.

And our entire SMS community is stronger thanks to the moms who volunteer as Regional Representatives, contribute to the SMS Journal, “The Spectrum”, or raise SMS awareness in their hometown.

Thanks to you, I have a sisterhood that few others get to experience.

This SMS Sisterhood does define me.

I no longer try to hide you.

The SMS Sisterhood is where I found my control.

Thank you for leading me to them.

I can finally dance again.

Sincerely, Tina McGrevy

For more information about PRISMS, the support network for Smith Magenis Syndrome visit http://www.prisms.org/

Special Needs Bloggers: Interview with Emily Heaton

Tell us a little bit about your family.

I live at home with my Mum, Dad and Aj. Danny, Aj’s Dad, is a royal marine so he’s away from home a lot. My Mum works at our local hospital, she’s a ward assistant on the orthopaedics ward.

My dad works for himself as a fireplace fitter. Family life with Aj is a bit hectic, always go-go-go. Danny tries to come home at weekends although he struggles sometimes with fuel costs for the 600 mile round trip!

I stay at home with Aj, he keeps me busy with appointments, therapies etc…

Why did you become a special needs blogger?

I started writing blogs after I saw that one of my Facebook friends had written a few.

I see it as a kind of ‘release’, I can write exactly what I’m thinking or how I’m feeling without feeling like I’m shoving my feelings and views in people’s faces, after all they don’t need to read my blogs unless they want too, right?

What are your hopes and dreams for the future?

That’s a tough one…The future is something I really try not to think about. The thought of it scares me, the unknown…

We are hoping to start looking for our own house soon, something suitable for us as a family and Aj’s needs (it’s getting hard lifting him in and out of the bath, and we have no room for a bath seat here!).

The main thing I worry about Aj’s future is what kind of life will he have? Will he be happy? Will he have friends? Will he ever be understood by others?

He starts part time at a special needs school in September, I’m hoping that will really help him!

One day we would love to be able to take Aj on holiday to Disneyland. He loves rides – the feeling it gives him in his tummy makes him laugh.

Our main hopes and dreams are just for Aj to live a happy life, to enjoy all he does and be accepted for who he is.

What’s the best thing about being a special needs mum?

It’s rewarding. Seeing a little person, come so, so far. The courage and determination special needs children have is unreal.

It’s taught me a LOT. I now have waaaay more patience than I did before Aj came along. Good things come to those who wait, right?

So the longer it takes for him to do something, the more we can praise and enjoy it when he does! It’s also taught me live in the ‘now’ and not take one single day for granted.

It’s changed me as a person as a whole, and I’d say that’s the best thing.

What do you do to relax?

Relax? What does that mean? 😉 I find writing blog posts helps me relax, as I said previously, I see it as my release.

Sometimes when my Mum isn’t working she will look after Aj so me and Danny can go out for tea or something, something ‘normal’.

Do you have a personal goal for the future?

To be happy. Comfortable… Prior to Aj being born, I wanted to work with special needs children or on NICU (how ironic?!).

I would still like to do that, although I think it would be too much when Aj is so young and everything is still so raw.

If you could go anywhere in the world with Aj, where would it be?

Disney or Panama. Aj would love Disney, but it would have to be in the quieter months as he would get so overwhelmed in the crowds!

Panama would be for stem cell treatment, as I have read so many positive things about it!

Shame we don’t have a never ending lot of money!

What’s been your highlight and low point of this year so far?

Our highlight would probably be being told Aj had been offered a place at our local special needs school! He will start part time in September and I’m really hopeful that he will blossom whilst he’s there!

Low point? Being told Aj’s feeding issues now mean he needs to have a gastrostomy feeding tube placed.

This has been very confusing and scary for us all but I’m sure it’ll be a relief knowing we will be able to get fluids and calories into him when he’s not feeling himself.

If you could have any piece of equipment for Aj in the world what would it be?

A fanlite, definitely!

They have one of these where Aj goes for his therapy, he’ll miss it loads when he leaves there to starts school 🙁

It’s a light in the shape of a rainbow and it slowly changes colours, I have never seen him as calm as he is in front of this light, he concentrates so much on following the lights and he stands really well whilst playing with it!

It’s very expensive though, but we’re hoping to save for one in the future!

What would be your one piece of advice for new special needs parents?

Relax! Honestly, I spent so much time worrying whilst Aj was a baby I forgot to actually enjoy him being so small.

Our life’s revolved around what would happen next or what we could do to try and prevent it. When in reality, if something’s going to happen there isn’t very much you can do about it.

What therapies would work best? What happens if that doesn’t work? Just go with it, acceptance is key. You can’t change the future, but you can change the way you handle it.

Thank you to Emily for her honest answers, if you would like to be a Firefly Garden Special Needs Blogger email us [email protected]

Special Needs Parenting: Best made plans…

It’s not that I wanted to put right any unfulfilled childhood dreams I may have had, you know the ballet lessons, Piano grade 5 or weekend Gymkhanas on the family owned pony.

Just I kind of expected to be able to teach my child to read and to ride a bike, to walk hand in hand to the park and eat ice-creams together.

Is that so wrong?

Part of the shock definitely came from the fact that neither my husband nor I had ever met a family with a disabled child and there are no disabled people in our families.

Apparently that’s unusual, we were told by the health visitor, although obviously not that useful. Did we think this was something that just happened to other people?

Probably.

Was I just the tiniest bit smug at having a ridiculously low risk of Down’s Syndrome for my age (the results came in at 1: 1,750 chance at 37 yrs old) I’m ashamed to say definitely.

But that’s when the only genetic disability we knew about was Down’s Syndrome.

The fact that it had taken us four years to have a baby, after two rounds of IVF (actually, the highly technical version ICSI where needles take over where nature should) plus a miscarriage, didn’t ring any alarm bells for us.

It should have done for the medical staff treating us, but that’s another story.

We didn’t know about other genetic conditions, ones that a baby could inherit, so when karyotyping (genetic testing) wasn’t offered, we didn’t know to ask for it.

Although most conditions are ‘de novo’ i.e spontaneous, not all are and I firmly believe that karyotyping should be offered to all couples going through IVF, sadly it’s not.

Nor did we argue when the ‘experts’ week after week reviewed the scores of ultrasound scans of our very slow growing baby, and said nothing was wrong.

We naively thought they knew best, or at least knew something, which was more than we did at the time. How wrong we were. How wrong they were, but again that is another story.

So nearly 6 years on since we became parents for the first and only time, I’m reaching a point where I’m accepting that things are not going to be the way I had hoped they’d be.

Or at least some of the parts may be, but they may take much longer to reach or need a different approach.

I can teach my lovely daughter to ride her amazing pink sparkly special needs trike, which a wonderful charity funded for us to make possible.

I do spoon feed her ice-cream when the mood takes her, the Mr Whippy type is her favourite, and I pray every night that I will still one day walk hand in hand to the park and everywhere and anywhere with her.

As for the rest, I was thrown out of ballet aged four for bad behaviour when my mood turned as blue as my tutu, and there is no room in the house for a piano (or garden big enough for that pony) anyway!

Perhaps in the end, our dreams are just what we make them and we are lucky to have any at all.

Special Needs Fundraising: Newlife Play Therapy Pods

​There is nothing more disheartening than being asked at Birthdays or Christmases what your child would like and just not being able to answer because you really don’t know.

Perhaps your child has one toy that he or she just adores and you continue to replace it regularly.

You’ve learnt over the years that there’s no point wasting money buying endless amounts of toys with the hope that he or she might just show an interest in something new.

Experience has shown you that the more expensive the toy the less likely they are to enjoy it!

But, the hope that you will find something new never leaves you and you continue to search through catalogues, read blog posts, google and join social media groups to try to find something new.

If this sounds familiar and you are a special needs family based in the United Kingdom, you should consider applying for a Newlife Play Therapy Pod.

Each Play Therapy Pod contains around £400 of equipment and comes with interaction ideas to give families guidance on how to use the equipment as part of interactive play and developmental programmes.

With the the Newlife play specialist, Newlife has developed and expanded the service so they now have more than 130 Pods in circulation, offering equipment for children with physical, behavioural and learning disabilities.

All Pods are available on 12-week loans, delivered direct to families’ homes.

They fall into two age categories – under and over-fives – with targeted equipment for tactile, visual, interactive and auditory needs in each age group.

Application for a Newlife Play Therapy Pod is straightforward with a short application and telephone interview.

Once you have signed and returned the terms and conditions the Newlife Play Therapy Pod is delivered to your home at a time that is convenient to you and collected 12 weeks later.

The Newlife Play Therapy Pod gives families an amazing opportunity to ‘try before buying’ a wide range of specialist toys and aids that are targeted at very specific and complex needs.

The guidance sheets provided are an excellent resource for parents to understand how to get the most out of each toy.

So with the help of Newlife Play Therapy Pods there should be fewer boxes of unused toys with parents now able to see exactly which toys their child enjoys the most before making their purchases.

To find out more about the Play Therapy Pod Service watch this short video.

To apply for a Newlife Play Therapy Pod contact the Newlife Nurse Helpline on freephone 0800 902 0095 or email [email protected]

Or complete the application form (PDF) on the website and return it to Newlife.

Regional Driving Assessment Service: Special Needs Car Seats

Every parent ever, will tell you though that as the child gets heavier, the combined weight of the infant carrier and their baby’s weight leaves your arms aching. Eventually it becomes easier to just carry the child from the car instead.

In the UK, when Hugh was little this first size car seat, which was rear facing took babies from birth to around 9 months or until they weighed 10kg, they then often moved to a forward facing car seat.* (Guidelines have recently.)

At 9 months however, Hugh was as floppy as a newborn still.

He was lost in the car seat that had served his older brother so well.

As time went on, he grew bigger and heavier but was still unable to reliably hold his own head up – a standard car seat no longer seemed appropriate. To further complicate matters he regularly stopped breathing, so travelling with him in the back of the car was unsafe.

What I needed was a rear facing car seat that I could place in the front passenger seat that offered the same level of support that a newborn needed whilst being a suitable size for a toddler.

So how do you go about finding one of those?

Luckily I discovered the Regional Driving Assessment Centre. They hold ‘Child Car Seat Clinics’ where you can go and be assessed for a suitable car seat.

I was able to self refer (although you can get a professional to do this for you) and for a nominal fee of just £10 was booked into the next available clinic.

The assessment involved detailing Hugh’s physical needs as well as what I wanted from a car seat.

Sometimes they will ask for information from your child’s physiotherapist or occupational therapist too. Then reps from a couple of different companies showcased a variety of car seats that would meet our needs.

Hugh was able to try all of the seats and we were even able to try them in my own car.

The Occupational Therapist from the centre checked Hugh’s positioning and took photographs of him in the seats.

There were two car seats I liked and each of the reps prepared a written quote for my chosen seats and the Occupational Therapist provided me with a list of charities that may consider funding, or part funding, the car seat.

A week or so later a very detailed written report from the Occupational Therapist arrived.

It contained photos of Hugh in the chosen car seats and gave lots of information about Hugh’s needs and how the car seat met them.

This letter, along with the written quotes made applying to a charity much easier.

There are a number of assessment centres around the country with the aim of helping older and disabled people achieve a better quality of life by helping them gain more independence through mobility either as a driver or a passenger.

One of the ways they do this is through the Child Car Seat and Harness clinics but they offer other forms of assessment too.

You can find out about the Regional Driving Assessment Service here: http://www.rdac.co.uk/

You can find out more about the law in the UK regarding car seats here: http://www.childcarseats.org.uk/

*Guidelines in the UK have recently changed. Group 0 Rear Facing Car Seats should be used until the child is 15 months or 13kgs.

Special Needs Families: Inclusion in Brown Towers

He was only about a week old and had been suffering from a level 4 brain bleed. The words had been mentioned by one of his consultants as a possibility and had slowly begun to sink in.

On receipt of this news, I nipped out to Sainsburys to get some food and I remember sitting in a chair by the checkouts feeling like the loneliest man in the universe.

Our son was not going to be “normal”, he might never walk or worse? Then his bowels burst and I stopped thinking about Cerebral Palsy.

Thomas was rushed by emergency ambulance to St Marys for surgery and over the next few months began his battle with life and death.

I didn’t much think about Cerebral Palsy in those dark days and months and when I did, it was mainly because he had developed Hydrocephalus. More surgery, this time Neurological. Thomas became bionic and edged his way off life support.

All we thought about at this time was getting him home. Cerebral Palsy was never even mentioned. On February 21st 2013 we finally got Thomas home with his twin sister Mia, then weeks later Jo took Thomas for a routine eye test and we discovered he was blind or Cortically visual Impaired to give it its correct and fancy title.

Cerebral Palsy? Nope, wasn’t thinking about it then either. Eventually though it caught up with us.

The biggest problem with having a twin sister is we had a day to day point of reference so it was clear to see where Thomas was falling behind. Luckily Thomas struck gold with his Mummy. How many severely disabled children are born to a highly experienced special needs teacher?

Jo knew exactly what equipment she wanted and how to get it. I strongly believe that gaining the “Little Room” was were things began to go right for Thomas?

Whilst Jo set about a regimental sensory development programme for Thomas, I was just Dad.

The initial despair I felt in Sainsburys was because I had learned I might be in receipt of a broken child but having lived through what we had lived through he was no longer a broken child, he was just Thomas.

The mantra at Jo’s school is “Inclusion”, this policy also applied to Brown Towers. So without deluding ourselves to the scale of the task, I chose to ignore his disabilities and get on with being Dad.

His disabilities would not be a barrier to me. What does this basically mean?

Well in simple terms we don’t stop to think “Oh we can’t do that thing we really want to do because of Thomas.”

We think “How can we do that thing we want to do and make it worthwhile for Thomas?” instead. This might take an epic bit of planning or an degree of accommodation from people but with the right attitude you can carry people with you. If in doubt, present your plans as a fait accompli 🙂

Take camping for example. We realised holidays with 4 kids, 1 of whom is profoundly disabled, would be tricky so last summer we bought a Bongo.

We carefully figured out how we were going to camp with Thomas and his siblings then starting with nights on our drive to get the feel for it.

This was followed by short breaks in local camp sites and finally once we had gained our groove and ascertained what equipment we did and did not need, we ventured off for a tour of Britain. We had a fabulous time.

But Thomas is not only a fully paid up Bongo Camper, he is a future Paralympian shot putter, a rambler, a connoisseur of vintage rock music and a valued participant at Red Rose Rollers roller skating where they even select the playlist around his preferences although he is a bit weak when it comes to the limbo competition.

With his physiotherapy, OT, standing frames, his Scooot and of course his Upsee we have high hopes that eventually Thomas may one day walk in some fashion.

Until then he his heavily dependant on his wheelchair and lots of other specialist equipment. Most of which is neither small, lightweight or easily described as “portable”.

Thomas sees his sisters doing “Normal” things and wants to join in. We try to facilitate this in whatever fashion we can muster.

Of course life is tough bringing up a disabled child in an inclusive household with multiple siblings but by challenging both Thomas and ourselves we know its worthwhile as every experience develops his potential towards what he can be. Isn’t that all we can ever hope for as parents?