Starting School – Not So Scary After All

There is quite the build up to it. As parents it starts a good while before your child’s first day.

Not only is there the choosing, but there’s the emotional build up – my little baby, off to school.

With Emma, our eldest, this was nothing but a positive experience.

She was so utterly ready to go.

You could see she’d grown out of nursery, that she needed more; more friends, more challenges, more experiences.

With Alex, our little undiagnosed boy with his endless list of disabilities…this was a much more complicated transition.

For all of us.

He’d been in nursery since he was one – slowly building up from two mornings to three full days and he quite clearly loved it.

More importantly – for us – they clearly loved him.

His 1:1 championed him, championed his achievements and advocated for his needs – every day.

It was safe, nurturing. It was known.

But school? Good God was he ready for that? My little boy who needs help in every aspect of his life? How could he possibly be ready?

Turns out that he – like his sister – was utterly ready.

It was just us having to catch up.

Having thrived at his mainstream nursery we wanted to keep that connection for as long as possible so we decided to do a split placement.

Alex’s main school is the additional needs school but, every day, usually in the afternoon, he’s wheeled over to the mainstream school – Emma’s school – across the car park and spends an hour or so with the reception children there.

Socialisation – so important.

Something I never thought would happen – my kids, even briefly, at the same school.

I cry just writing it to be honest. It’s been so good for him – it keeps him connected with some of the friends he made at nursery and it – trailblazer that he is – keeps disability in front of the children (and the teachers).

I feel so strongly that the more disability is integrated into mainstream life the less it becomes ‘other’…not scary, just different.

And to the children, he’s ‘…just Alex’.

To the parents who are going through this process for this year, for this year’s intake… don’t be scared.

It’s not the path you’d have chosen, it’s not the path I’d have chosen, but it’s not as bad and scary a path as you’d imagine.

Sitting here, now, I find it hard to see how I got myself so worked up.

His additional needs school is as nurturing, as championing as his nursery.

His teacher and TA clearly want the best for him and will shout as loudly as we do if needs be.

And the opportunities it offers: hydrotherapy, horse riding, an on-site sensory room. All this stimulation is vital for any child’s development, but especially those with additional needs.

It brings them to life.

Alex is pre-verbal, so his way of expressing happiness is flapping his arms and legs whilst having a great big grin on his face.

It’s delightful. This he does both on the way to school and on the way home.

I like to think he’s telling me about his day, how much fun it was, the things the other children did… we talk to him as if it is.

It’s the same conversation I have with Emma – just in a slightly different fashion.

Everyday Sensory Fun

It’s all new to us and we are learning as we go along but my understanding is that Twinkle is a ‘sensory seeker’…..she loves sensory experiences!

However she doesn’t always understand how to use her senses to access things.

For example, her SPD results in cortical visual impairment, meaning that although her eyes can see she doesn’t always use them, doesn’t always process the information that her eyes are giving her and will sometimes revert to using her sense of hearing or touch instead – unless it’s something really worth using her eyes for!

Unfortunately finding purpose designed sensory facilities seems to be a tricky one (disappointing, as sensor play is inclusive for all abilities, especially toddlers and younger pre-schoolers, but it seems to be a rare beast and generally limited to the realm of special needs), so we have had to find our own everyday fun!

This can be as simple as just going outside!

Twinkle LOVES being outside, just outside, anywhere and in any weather! I suppose the natural light, temperatures, smells, sights and sounds are just so different to being indoors, and so open.

She loves looking up at the trees and seeing the contrast with the sky and hearing the wind in the branches, feeling the wind and sun, and even rain, on her face.

It just lights her up!

So our favourite free, local entertainment is to take a walk to our (huge!) local garden centre.

This provides us with year round entertainment. In the summer, there are all the flowers and plants, sights, colours and scents and in the winter they put on a huge Christmas display with lights and jingly music galore!

There is also a pet corner and aquarium shop.

The rabbits and guinea pigs Twinkle can take or leave, but the fish are THE thing!

She loves them!

Partly the bright colours and movement, but I think really it’s the bubbles and the reflections of the light on the water in the big fish tank that grabs her attention.

I have toyed with getting a fish tank for home, but maintenance and cleaning it puts me off….plus why have our own when we can come to the garden centre, see the fish and then treat ourselves in the centre’s café with a huge piece of cake!?

My Son is Almost Ready For a Hoist – Why is it So Hard to Accept?

I am looking forward to having the adaptions done as it means Oscar will be able to access his home better.

He will have a bigger bedroom to move about and play in (and store his ever growing pile of toys in) and also have his own wet room which he desperately needs as our current bathroom is just not suitable.

I am not, however, looking forward to having workmen in and the mess and disruption that having these adaptions will cause.

When we have the adaptions done we will also be having ceiling hoists put into Oscar’s bedroom and wet room.

This is something I am finding very difficult to get my head around.

I think that it is the sudden realisation that at some point I am no longer going to be able to carry or hold my child properly or safely, and that breaks my heart.

Oscar is only getting bigger and heavier so deep down I know that the need for a hoist is not too far away.

But, having a hoist fitted also makes me feel like I am accepting that Oscar will never be able to sit up or walk and I am not ready for this.

I accepted Oscar’s specialist chair, standing frame, specialist buggy and bath seat without a second thought.

But, a hoist?

I don’t know why I find accepting that piece of equipment so difficult, but I do.

Maybe it is because they look so clinical.

Maybe it is the thought that if Oscar ever has any friends around to play and they go into his room it will stand out like a sore thumb.

It will be something else that makes him ‘different’.

I know that having the hoists fitted are in the best of interest of me and Oscar to ensure neither of us are hurt when lifting and handling but it also comes with the slight feeling of resentment on my part that we will have the need for a hoist at all and I know that sounds awful.

It makes me feel awful and it is not like me to feel this way.

I know we are lucky that we are going to be having these adaptions (we applied for a Disabled Living Grant) as other people who desperately need adaptions and equipment simply do not have this option.

So, I know that this post sounds a little ungrateful and it is not meant to as I am very grateful but sometimes, what deep down you know is for the ‘best’ does not always seem that way.


One-Sided Conversations with my Non-Verbal Child

Except if you were to listen in closely, you’d notice that I’m the only one talking.

You see, like many children with developmental delays, Mia has trouble with speech.

More specifically, we were told that along with her diagnosis, she would more than likely be non-verbal for life, a typical feature of her rare syndrome.

The absence of speech is a hard one to grasp.

We received Mia’s diagnosis shortly after she was born.

Any first time parent knows the trials of having a baby that can’t express themselves.

But what does that mean as a child ages?

Will my child be able to use sign language, sounds or approximations to express herself?

Will my child remain like a baby, only able to cry to let me know that something is wrong?

Will communication devices be useful for Mia’s situation?

The unknowns can be stifling.

We’ve chosen to roll with it and take things as they come.

In the meantime, my husband and I talk with Mia.

The commentary fills our days.

On mornings when I get to sleep in and Patrik has duty, I hear his booming voice in our living room as he jokes with Mia and fills her morning with words that we hope she understands.

Even if she doesn’t understand each individual word, I hope that she feels the love that is uttered with each tone.

Even now at four years of age, we have no idea what the future will hold.

Mia communicates with her smile and her mood.

If she’s hungry, she’ll bang her hand on the table and smack her lips.

If she’s bored, she grunts.

Want to go faster in the adaptive stroller?

Mia will rock back and forth and make a rowing motion with her arms to show us that she has a need for speed.

This past August, Mia started kindergarten at a school specialized in the education of children and adults with visual and hearing disabilities.

In the short amount of time that she has been there, we’ve already noticed that Mia is learning alternative ways to express herself.

The school is amazing in finding a child’s individual way to communicate and supporting him or her in growing this ability.

Recently she started saying ‘mom mom’.

She says it with happiness and a smile.

She knows what she is talking about!

It melts my heart.

We were even able to catch it on her voice recorder.

She plays her own voice at school by hitting the big red button, unleashing a recorded stream of ‘mom mom’ for everyone to hear over and over again, and she smiles a smile, worth 1,000 words.

I imagine that her proud smile means, ‘That’s my voice. Don’t underestimate me.’

Until Mia adds more words to her repertoire, or gains more exact skills in communication. I’m going to keep on doing what I’m doing, and that is talking.

I talk to her as if we are having a two-way conversation.

I pause.

I look for signs that she understands.

Not always sure if the comprehension is there, I try to make decisions and give Mia answers that she would want to hear.

I ask Mia’s doctors, therapists, caregivers and teachers to talk to her as they would with any child her age.

That means talking with her and not about her, and giving her respect.

During a doctor appointment where we need to talk about Mia, I set the tone by talking about Mia as if she understands every word.

The truth is, we don’t know her level of comprehension, but I know that I don’t like people to talk about me without acknowledging my presence.

We talk positively.

We are Mia’s voice.

We are Mia’s cheerleaders.

The commentary that rolls off my lips begins from the moment I help Mia out of bed in the morning until Patrik carries her up to bed each night.

Good night Mia.

Sleep tight.

Can’t wait to talk with you again tomorrow.

Don’t Call My Kid Dumb

He’s absolutely perfect just the way he is.

But that doesn’t mean everyone is going to see him the same way I do.

Here’s how I deal with ignorant people.

1. I Tell It Like It Is – There is no shame in Cooper’s developmental delays

In fact, I now believe it’s his delays that make him so much more special than most kids his age.

And I don’t mean in a special needs kind of way, I mean he’s just an awesomely wonderful kid.

But unfortunately, there’s some people who can’t see past Cooper’s speech and his inability to understand some of things that are said to him.

To those people, I say shame on you! Special needs are nothing to look down upon and I find it sad when people look at Coop as if there is something wrong with him.

2. Educate the Nay-Sayers

Yeah, those people I was just referring to need more than a kick in the head.

They need to be educated on what your child’s needs are.

Let them know what’s going on with your child, then, make it clear that if they can’t see anything but the “bad” then they don’t need to stick around for the good.

I advise printing off material for all of your extended family and friends to learn about your child’s needs, then let that be the end of it.

When they see how it’s totally not a big deal to you, chances are they’ll come around eventually.

Until then, forget about ‘em.

3. Don’t Get Too Defensive

Confession: I have real trouble following my own advice on this one.

Anytime someone has something negative to say about my Coop, I want to throat-punch them.

Okay, maybe that’s a little extreme, but you get my point.

Still, getting into a knock-down, drag out with an idiot who doesn’t get your child is so not worth it.

Instead, politely inform them that there’s nothing wrong with your child, however they (the person insulting your child) might consider getting a brain scan for activity.

Then, just walk away.

After all, it’s not yours or your child’s fault there are bumbling idiots in this world who open their mouths before they open their minds.

The GoTo Shop

If I do venture into a store with Daniel in his wheelchair, ​I’ve always found Tesco staff very helpful (maybe I’m biased as I was one for 4 years).

They’ll go and get me items, help me pack and even offer to help me out to the car.

However, the most I am able to buy on any one visit with Daniel is one or, at a push, two bags worth of items.

It’s not easy pushing a wheelchair, keeping Daniel’s 4 year old brother under control and carrying a basket.

Daniel is now too big for a standard trolley – with his super long, wiggly legs I can’t lift him high enough to guide his legs into the seat.

One basket is never going to feed a family of four for a week.

This means that I have two options: I can go the shops every day or I can shop online.

I think that’s part of the reason why I stick to Tesco – it’s easy, my online list is already set up.

It’s a pain going somewhere new and starting a new online list!

It’s OK shopping online, but it would be nice to have the choice.

So when I heard the news that Sainsbury’s had purchased 600 GoTo Shops, which provide a larger seat for children with special needs, including a five point harness, lateral support and an open front for ease of transfer, my first thought was, ‘Aww – I wish it was Tesco!’

But, I was determined to have a go and, last Tuesday, I headed out to do my first weekly shop at Sainsbury’s with Daniel in tow.

So what did I think?

Well more importantly, what did Daniel think?

He was very happy and comfortable in the GoTo Shop, it gave him just the support he needed.

He happily allowed me to wander up and down each aisle doing my shopping – just like any other family across the UK.

It was really lovely to involve him in something that is seen as a chore – it was a whole new sensory experience for him touching different items and packages, lots of lights and noises and people stopping to talk to him.

I also met a friend, we stopped to have a chat – this reminded me of the social experience that shopping is!

I would say that the trolley is slightly smaller than a standard trolley, but this just made me choose more carefully.

It is slightly different to push than a standard trolley but I soon got the hang of it. There’s only one of them so you’re reliant on it being available at the time you choose to go shopping.

In most stores the trolley is kept at the Customer Services desk so this may cause difficulty in getting it out to your car – the last thing you want to do it get your child out of the car into their wheelchair/buggy just to find the trolley – but with most supermarkets there are usually staff in the car park collecting trolleys who are available to help.

So all in all – it was a lovely experience!

Sitting up nice and tall in front of me – I got lots of eye contact and chatter from Daniel which was an added bonus.

Now that I have tried it and it was a success, Tesco may have just lost a customer…

Have you used a GoTo Shop in a Sainsbury’s store?

Why not review it and support our Campaign to get these trolleys into every store by clicking here.

We want every family with a child who has special needs to have the opportunity to shop where and when they want – with your support we can get a GoTo Shop in every supermarket making it a fun family experience for everyone.

Space to Change Update

Just before Christmas I emailed a local shopping centre to ask them to provide Space to Change.

The Centre Manager asked to me call in – it was a great visit – not only because Karen Marshall, the Centre Manager of Bow Street Mall in Lisburn, Northern Ireland was keen to get involved, but also, she wanted to help me get information out about the campaign to all the shopping centres in Northern Ireland through the NI Regional of Shopping Centres. ​

So far, the response has been great and, just last week, I received an email inviting me to visit a shopping centre in Antrim (Northern Ireland), Castle Mall.

Yesterday, I set out on a very cold and snowy day along the M2 motorway to meet Theresa Murray, Centre Manager.

Theresa showed me the shopping centre’s existing facilities, which were already pretty amazing for families.

They included two changing areas, a breast feeding chair, a cubicle with an adult and toddler toilet.

Theresa explained that they would like to extend an existing bench in order to receive an Orange Space to Change Award.

I explained that it would be better for the bench to be around waist height for ease of transfer in comparison to the above waist height that baby changing units are often placed at.

We talked about privacy, hygiene and space being the key components of a good Space to Change venue coupled with understanding from venue staff.

Castle Mall is located in the centre of Antrim Mall and I am sure that having a Space to Change award will encourage many families to visit the shopping centre to use the facilities which will also be a boost to stores located in Castle Mall.

I’m looking forward to receiving a call or email from Theresa so I can visit again, this time to present them with their Orange Award.

So I’ve sent just one email that resulted in 6 shopping centres in Northern Ireland currently making changes to receive a Space to Change Award.

My goal is that every shopping centre in Northern Ireland will provide Space to Change.

If you’d like to get involved why not become a Space to Change Champion just like me.

All you need to do is ask just one question: ‘Could your business provide Space to Change?’

It could make a real difference for your family and others in your area.

If you have any questions get in touch via the Contact Form.

For up-to-date campaign news click here.

You Soon Find Out Who Your Friends Are…

We can apply this to pretty much every bad situation.

You lose your wealth &ndasndash; you soon find out who your friends are, you lose your fame you soon find out who your friends are, you’re diagnosed with a horrible disease, you soon find out who your friends are!

Well I had a disabled child and I soon found out who my friends were. I started my pregnancy with two close friends who were also pregnant each with their second child.

They were my go-to girls, one I’d went to university with, the other was the my closest friend at work and although they didn’t actually know each other I spent most of my time with one or the other.

They guided me through pregnancy with gentle encouragement and reassurance!

Finding out I had a disabled child was a bit of a slow burner, everything appeared quite ‘normal’ until she started missing those dreaded milestones and so began our rollercoaster of a ride into the world of disability and special needs.

About 6 months along that new frightening path I began to notice that one of my friends was starting to be a bit distant with me, our weekly get togethers were being cancelled or being rearranged in busy, loud places that my then one year old non sitter, non crawler couldn’t cope with.

There were a few comments that made me stop and think ‘You’re lucky she can’t climb out of her cot’ and similar 5 years on and I no longer see this friend at all – it makes me sad, I’m not sure why she cut us out – was it all just too hard, too much work, too many tears…

Who knows!

But boy did my other friend step up to the mark, the day after our very first Paediatrician’s appointment, over 5 years ago now she said to me ‘It could’ve so easily been my daughter, my family and everyday I’ll ask myself what would I want you do if it was the other way round’.

What this means is she doesn’t just offer help she goes ahead and does it – casseroles appear ready to be heated, she comes to visit and shoos me upstairs for an hours sleep, she fundraisers endlessly to help us buy expensive equipment.

She is quite simply amazing.

If you are reading this as friend of someone with a disabled child – remind yourself it could’ve been you and ask yourself what would you want your friends to do to help you?

Everyday, I thank my lucky stars that I found out who my friend was.


Tips for Getting Your Child Back into Routine After the Holidays

For kids, the feelings are similar and the change can result in some unwanted behavior. Here’s a few tips for getting your children back into their regular routine as painlessly as possible.

Prepare Your Child

Don’t let the first day of school creep up without warning. The weekend before, explain to your child that he or she will be returning to school again soon. Take the preparation one step further by reinforcing bed time. Much like our minds and bodies need time to readjust to our sleep patterns, kids need it, too. Getting them to bed earlier will make the Monday morning wake-up call much easier to handle.

Get Back to YOUR Routine

Kids look at our behavior much more than we realize. If you are reinstating your own bedtime and setting your alarm to wake up early each morning, chances are your child will fall back into their own routine easier.

Preserve Holiday Memories

If your child is having trouble letting go of the holidays, have him or her prepare a memory box. Gather photos and other keepsakes, like a piece of wrapping paper or an ornament, and have your child decorate a shoebox to place these items in. Explain to your child that he or she can look in the box anytime they want to remember how much fun the holidays were. This can become a tradition for years to come.

Let Them Protest

If your child has a less-than-happy reaction to the news of returning to school, let them have their meltdown. The truth is, we’d like to have our own pity party over returning to work and we shouldn’t expect our children to feel any different. So, give them time to express their feelings then firmly explain that though you understand and sympathize with them, they still have to return to school. Chances are, having a little meltdown now will prevent any problems the morning of.

Show Extra Love

Separation anxiety is often the culprit of children’s disdain for returning to school, so be sure to spend a little extra time snuggling and loving on your child so they will feel secure.