Fun Summer Break Activities for Special Needs Kids

Just when our special kids are finally getting used to following their school year routines, along comes summer to throw a monkey wrench into their plans!

Many families dread the idea of the long summer holiday.

It’s not because they don’t love and enjoy being with their kids!

It’s simply because they don’t know what to do to keep their kids happily occupied all day, every day, for days on end!

If  you are the parent of a child with special needs who is dreading the upcoming summer vacation, I’d like to make the following suggestions that may put your mind at ease and reduce your anxiety just a little!

> If you think your special needs child would be better off without such a long break from their school routine, check to see if your school district offers extended school year services for kids with disabilities.

> Many areas have day camps or even overnight camps designed especially for children with special needs, so check with your local and national disability organizations to see what programs might be available where you live!

> Check with your local playgrounds and parks to see if they offer summer programs your child may be able to attend.

> Establish a regular summer time routine similar to your child’s school year routine and stick to it!

For those at a loss of things to do with your child this coming summer, I’d like to offer the  following ideas for fun activities you might like to include in your summer time routine!

– Make Garden stones. There are all kinds of simple and easy kits available online and at most craft stores.

– Set up a nature scavenger hunt.  Have your child look for items such as: pine cones, feathers, sticks, flowers, and rocks. There are so many things your child can look for outside.

– Set up an obstacle course indoors or out!

– If you’re worried your child might lose the academic skills he worked so hard to achieve during the school year, purchase some educational materials and “play” school with your child for an hour every day!

– Purchase several paint brushes of different sizes then fill a bucket with water and let your child “paint” the house!

– Draw with sidewalk chalk.

– Take your child on a nature hike.

– Start a leaf collection.

– Purchase a flower press and start a flower collection.

– Dig for fossils in the back yard!

– Build a dollhouse.

– Take regular trips to the library.

– Join the library reading program.

– Make a nature collage.

– Grow a mini garden or container garden.

– Set up an outdoor sloppy sensory station. Include containers of shaving cream, pudding, cooked spaghetti, rice, beans, finger paints, mud, sand, and jello!

– Check with your local parks for free outdoor concerts.

– Take regular trips to the park or playground

– Set up the sprinkler then run through it to cool off!

– Set up regular play dates with friends.

– Set up your own backyard Olympics activities!

– Look for and identify bugs

– Go bird watching

– Visit your local pool.

– Plan a few days at the beach.

I hope this list gets you off to a good start and sparks your own imagination in keeping your child happily engaged, occupied, and learning this summer!

E is for: Epilepsy

I was having a dream, more of a nightmare really that I was carrying Lucy in a baby sling and she’d fallen down too far, head squashed against me and couldn’t breathe.

I awoke with a start and then realised that her scream had woken me.

It was a blood curdling, wake the street up kind of scream and I was out of bed and by her side in seconds.

She was sitting bolt upright staring forward and unresponsive, then her tongue started darting in and out of her mouth she started drooling.

Her eyes then drifted off up to the top right and she fell back onto the bed.

It was 2.30am on a Sunday morning and I had absolutely no idea what was happening but instinctively knew I must call an ambulance.

My husband had flown into the room with me and was now cradling her listless body on his lap.

She was due heart surgery in a few months time, so at that point I genuinely thought she was having a heart attack and we were losing her.

The 999 phone operator was amazing, she kept calm getting me to speak clearly.

Then as I told her our details, Lucy’s right arm started to twitch, subtly at first and then more noticeably.

Then her right leg joined in and within a minute her whole body was jerking.

Ridiculous as this now sounds, I was overwhelmed with relief that she was having a seizure and not a heart attack.

I knew nothing about epilepsy apart from thinking it was fairly common and curable.

She remained that way until the ambulance crew arrived and took over.

They administered diazepam and nothing happened. Her breathing then became laboured and the sense of urgency in the tiny nursery stepped up a pace, we were going into A&E on a blue light.

The paramedic gently scooped Lucy up in his arms like a broken little bird and carried her to the ambulance.

The blue lights danced off of the neighbour’s houses and woke some of them up.

My husband drove behind us in his car whilst I sat numbly in a ‘jump seat’ in the back of the ambulance watching the Paramedic try to revive my daughter.

It’s a long 25 minute journey to our local hospital and in the middle of the freezing cold night it was also foggy.

Despite the trauma unfolding, there was a kind of peace and calm in the ambulance, a sort of protection. No one spoke.

That all changed as we arrived at the A&E department and were met by a team of doctors.

Still shaking in a constant seizure, Lucy was laid on a bed, surrounded by medical professionals.

They spoke quickly to each other, applied monitors to Lucy and tried to get a cannula in to medicate but it was futile.

In the end they asked us if they could access her blood supply in her bones and we watched morbidly transfixed as they plunged needles into her shins like they were butter.

On the second attempt it worked and yet the medicine they gave her still did not stop the seizure.

She had been fitting continually for an hour and a half.

There was talk of inducing a coma to give her little brain a rest, an air ambulance to London was mentioned as they explained it was too complex for them to deal with.

Then miraculously the seizure stopped.

But then the fall out started. Cat scans, admission to the children’s ward for 48 hours observation.

Detection and treating of the underlying infection that had caused her spike in temperature and the seizure.

We went on like this for another eight months.

Because of her age (2 ½) doctors assumed they were febrile convulsions due to high temperature.

It wasn’t until one of our stays coincided with a paediatrician on call who is an epilepsy specialist, that the E word was even discussed with us.

She had another six seizures, each one different.

The second one only lasted a few seconds and went away on its own.

The third she stopped breathing in my arms and turned blue.

Luckily we had rescue meds by then and quickly giving them to her she came round and started breathing again.

All the other times we have had to call an ambulance because the seizure either didn’t stop or her breathing became laboured following rescue meds.

We now know she has Status Epilepticus, or seizures which don’t subside within 5 minutes. It’s bad, very bad indeed.

We count our blessings though, thankfully she only gets them when ill, so we are extra vigilant with that.

She is responding very well to the epilepsy medicine and we have now been able to manage any breakthroughs at home by having a no wait on rescue meds.

Lastly the thing that has made all the difference to our lives, and given our sleep back to us is an epilepsy alarm called Pulseguard, created by parents of a child with epilepsy.

Lucy wears the watch like monitor at night and it sets off an alarm if her heart rate goes too high or low.

It’s saved her life once already, so even though it is a little expensive, to us it’s priceless.

So that’s it. Mr E stormed into our home one November night and tried to tear us apart, but you know what,

So far, he hasn’t won and we will do our best to make sure he never does.

Technology and Biscuits

We find a tablet P.C. an invaluable part of our holiday kit.

We love them because you can download so many different things onto one, easily portable, device: games, favourite T.V. programmes and films, books, and educational apps that support numeracy, literacy, and communication skills.

I don’t feel bad about using screen time to keep Freddie busy at home, either.

I know, I know – there are people who believe that young children should not have any screen time at all. While I wouldn’t want Freddie to be glued to a computer, a tablet, the television, or any other electronic device all day, every day, I don’t think that, ‘rationed’, use of them will do him any harm. In some ways, I think it can even be beneficial, used in moderation. 

And moderation is always possible. I am not afraid to use the word ‘no’. I am the adult, I am the one in charge; I decide when he has the tablet or T.V. and for how long. I set a timer if necessary, and when the time is up, the device goes off, no matter how much he protests.

Very often, when the alarm rings, he switches it off himself after a bit of gentle reminding.

I have the same attitude to biscuits.

We have found some novel ways to exploit screens to support his learning.

Freddie loves animals. We have taken to recording family-friendly wildlife programmes (pre-watershed), which he really enjoys watching.

He has a tendency to repeat words and phrases that he hears on the television.

When he does this, we pick up on the words and talk about them, and try to add some context, so that what starts as merely echoing leads, in time (hopefully), to understanding.

Another thing we have noticed, and this is one in the eye for those who say that all screen time is detrimental to children, is that Freddie responds much better to a book once he has seen an audio-visual version of it, such as the BBC adaptations of popular Julia Donaldson stories.

Viewing these on screen has encouraged him to engage more actively with the printed books. He now reads them more or less independently.

Freddie still gains just as much pleasure from traditional toys and activities as I did, growing up in the days before personal computers and mobile phones were available (‘Pong’, was as near as I got to a video game).

When we fly I also take along non-screen-based distractions, such as paper and coloured pencils.

One thing that went down particularly well was a new book, presented as a ‘surprise’ once we were seated on the plane.

I can see this becoming a tradition, and who knows, perhaps giving books as exciting presents will help keep alive, by association, his love for real, ‘paper’, books that can be handled, smelled and cherished.

When Mentions of the Future Make My Heart Ache…

They’re only 3 and 5 so the list was rather fun to listen to. My 5 year old stated that when he turns 6 he’ll get to drive a car, specifically a convertible.

We corrected him and said he needed to add ten years to that number, but I did mention that I can’t wait to ride with him as the wind blows through my hair.

The boys went on to talk about all the things my youngest son will do when he’s as big as them.

My chest tightened as I went along with their game.

I smiled at the idea of him driving a car even though those boys had no idea that will never be in his future.

Our youngest son is 3 and physically at the level of a ­6 month old child. He has a rare genetic condition, PMM2­CDG, that limits him.

He attends therapy nearly every day of the week; I can’t think of anything we don’t need to work on.

I know that there are milestones and moments in life that he will never experience.

I vividly recall an appointment with his metabolic specialist when she simply stated to the student who was with her that, “He’ll never have children.” I knew this, but hearing it aloud hurt even more.

As the boys were being silly and going on and on about their adventures they’ll have after they turn 4 and 6, I had to hold back tears and keep smiling. I was excited to hear their innocent dreams for the future but heartbroken that the future looks very different for our youngest.

As the day went on I kept thinking about his future and the more I thought about it the more I smiled. The tightness in my chest relaxed and my sadness turned to joy.

I scolded myself for thinking of all of the things he won’t do in the future.

I pride myself on concentrating on the abilities he does have rather than the ones he doesn’t, so why don’t I do that with his future?

To be honest, in the grand scheme of things, driving a car doesn’t matter. What matters is his happiness and quality of life. Those two things are things I can absolutely guarantee will be in his future.

His own children won’t be, but smiles will be.

A car won’t be, but giggles will be.

Walking down the aisle to his wife will not be, but plenty of hugs and kisses from me will be.

Walking unassisted may never be, but my hand holding his throughout his entire life will be.

So next time a moment in the future is mentioned, one that I know is a distant dream, I’ll smile and think of the possibilities rather than the impossibilities.

Seven Wonderful Ways My Child Communicates Without Any Words

If you tune into my son and learn how he DOES communicate it is truly astounding how adept he is at getting his message across.

What we all need to remember is that communicating is as much about learning to listen to someone else as it is getting our own message across. 

Even a child with severe communication difficulties can communicate if WE tune in properly.

Here are seven ways my son communicates:

1. What is he looking at?

Eye contact is not something I get often but by following what his eyes are focussed on I can often find a way to understand him.

Two nights ago he was very distressed about something. By following his eyes, I was able to understand it was an open door that he found so distressing and I was able to close it for him.

2. Where is he going?

Since he was able to crawl at 12 months and walk at age three he has used his physical abilities to get somewhere to communicate. He is rather skilled at escaping and so one day I followed him as he walked outside only to find he had stopped at a bush half a mile away from home.

He had no way of communicating verbally that he longed for the sensory input of feeling some leaves so he just used his physical ability to take himself to it instead.

3. What has he put on his iPad?

Isaac loves google images and has lots of saved searches on his memory. We never delete these as he likes to go back to the same ones over and over, mostly pictures of hand dryers and lifts!

On Saturday he brought his iPad over and sat on my knee to share something with me. It was a picture of his favourite shopping centre and he used that to show me his desire to go on a train trip to see the lifts at the shops.

4. What is he pointing to?

My son, like almost all children, has a favourite toy. It is a small plastic character holding a small plastic ice-cream. When he loses this toy he finds any plastic toy he can and points to its hand.

Though many people would have no idea what he means by this, he knows mum understands. The more you know someone the more you get to tune in and know them deeply.

5. What noises is he making?

He may be non-verbal but he does make noises. We have settled, happy noises, and ‘I am not happy’ noises. We have the ‘I am not happy noises’ whenever the car reverses, we go a different route, he is taken away from lifts, he does not get his own way or he gets his nappy changed.

We have screams, laughter, sneezes, vocalisations and, “Ahhhh!” and, “Ooohs!” when life is good.

Non-verbal does not mean quiet! Silence for us just means he is poorly!

6. How is he behaving?

It is pretty obvious that a kicking, fighting, screaming child is not a happy one. There really is no need for words at such moments of frustration.

Equally when he sits himself on my knee and touches me his actions say much more than words ever could. Is he biting? Is he flapping? Is he excitedly dancing round in circles?

Behaviour is one of the most fundamental ways anyone communicates. He may not be able to speak but slamming doors, stamping and yelling get his point across alright!

7. What can I hear?

Can I hear water? Chances are he has decided he wants a bath and has worked out how to turn the taps on!

Can I hear tapping? I would put money on the fact he is sitting on a windowsill tapping the window at something he has seen outside.

Is he giggling loudly? That will mean he has climbed in my bed and is laughing at the thought of hiding under the duvet again.

If we are out anywhere and he hears a lift or hand dryer I can guarantee that is where I will find him. Of course the most common thing I hear is his iPad at full blast!

Why do children think this is the only volume technology can be played on? I hear lift doors open and close in my sleep!

One day as I was cooking dinner and my son was sitting at the table I looked over at what he was doing.

He was on google street map and had taken himself to the nearby fast food drive-through!

I suddenly realised the dinner was burning and he was trying to tell me we should all go for burger and chips! So we did…

Communication difficulty?

Sure he can’t talk or read or write… but he is smart and he never ceases to amaze me with the inventive and humorous ways he finds to communicate without language. 

Is My Little Boy Becoming A Toddler Or Is Medication Changing Him?

Everyone who met Zachariah would tell me just how lucky I am to have such a beautiful, happy content boy, a boy who will smile at every little thing you do. They were indeed correct.

What concerns me about this lovely compliment is how do they see my son now when he’s having a bad day, when he’s tired and sleepy from seizures or  fed up from the constant therapy, do they still see what I see, an amazing, beautiful and determined little boy?

In November Zachariah was diagnosed with Epilepsy and pretty much started the medication straight away, they warned me that there are side effects, such as hair loss, tiredness and change in behavior.

This absolutely devastated me, I didn’t want to lose my happy little chappy, I wanted to keep him the way he was.

But then the protective side of me needed to do this as the epilepsy was no fun at all and it needed to be tamed.

I went with a friend to this meeting, who was the most supportive person I could have asked for, she comforted me and told me that it is for Zachariah’s best interest to have the medication. She was right! But so was the consultant!

Zachariah has become very temperamental and can cry at any little trigger, to sum it up he’s becoming a 2 year old! I’m not sure I can explain how this has made me feel, at first I was freaking out, I started to grieve over my happy, all smiling baby.

I was beginning to feel very drained and frustrated, sending a lot of hatred towards epilepsy for taking my son away.

But the more I pondered on this and spoke to friends the more I started to feel that maybe Zachariah was just developing, he was entering the world of, ‘being a toddler’.

This conclusion whether it be right or wrong comforted me like I never thought it would, my boy was choosing what emotion to express and he was expressing it so amazingly, he was telling me ‘no’ in his own way, he was communicating with me!

And guess what? I haven’t lost my son, as he’s very much still here, he is still lighting up every room with his gorgeous grin and his contagious smile, however he now comes with a little attitude!:)

I love my Son and everything he teaches me!

Rochelle, Mummy to Zachariah.

Choose your Weapons

One of the most prevalent and problematic ways of perceiving, or looking at, disability is this:

Society tends to view disability as a problem with the individual – that an individual’s medical condition is the root cause of their exclusion from society.

This is known as the, ‘medical model’, of disability. It is this viewpoint, or construct, that is responsible for evolving a great deal of the terminology surrounding disability that is in regular, mainstream use.

It is language that, by its very nature, denies that many of the most disabling aspects of any given condition are caused by societal barriers, that is, society’s failure to recognise and accommodate the differing needs of people with impairments.

It is terminology that is patriarchal and negatively nuanced (e.g. ‘invalid’), subtly suggesting that disabled people are non-functioning members of society who need looking after and are not capable of independence.

Much of this language is based on false premises that have since been disproved; but it is perpetuated by the medical and social care professions, and often the mainstream media.

It is generally considered offensive by the disability civil rights movement.

The language that people use both reflects and influences how they think, and as a consequence, how they react to, and deal with, situations and other individuals.

If we are conditioned to believe that the problem lies with the individual, then we will take a different approach than we would if conditioned to regard the problem as being with the attitudes, systems and practises of society.

Space to Change Wheelchair Accessible Toilets

The white paper – “Considerations in the Provision of Space to Change Wheelchair Accessible Toilets”- has been written by Clos-o-Mat to clarify how the new facility sits within current legislation and good practice, between conventional wheelchair-accessible (Document M type) toilets and the ‘bigger and better’ Changing Places assisted accessible rooms.

The document covers the rationale behind Space to Change, the technical requirements, and how those integrate into Building Regulations Approved Document M, BS8300:2009, the Equality Act and even the sector-specific Department of Health Health Building Note 00-02.

“Space to Change enables venues that are limited financially and/or on space to meet the needs of up to three million British children and adults who need changing and lifting facilities for their personal hygiene.

It builds on the standard wheelchair-accessible toilet which should always be provided, even if no other toilet facilities are, and ensures that even within 7.5m2, the toilet needs of almost everyone are addressed,” explains Robin Tuffley, Clos-o-Mat marketing manager.

“But it is a new concept. As the expert in toileting provision at home and away for disabled people, we are ideally positioned top help specifiers- architects, customer services managers, facilities managers, contractors- understand the why’s and wherefore’s of a Space to Change provision.”

Supporting white papers on general accessible toileting away from home, hygiene rooms, Changing Places, and sector-specific transport, leisure and healthcare are also available at the same link.

The Clos-o-Mat website also hosts CAD blocks, typical layouts and technical data for all the ‘away from home’ toilet facilities.

Ideas For Your Special Needs Summer Picnic

In the spirit of childhood experience and family participation like a moth to a flame; there you are coordinating and planning a summer picnic.

Here are some great tips to help make your picnic easy, fun, enjoyable and accessible:

Picking the seating option for your picnic is the first step. 

Do you want a picnic table or are you going to be laying out a lovely blanket on the ground? 

For those seeking a great accessible picnic table for children who use wheelchairs, the Convert-a-bench is a fantastic option.  Retailing at around $100 each this piece of outdoor furniture does just want the name suggests; converts from a outdoor bench to a picnic table (single) or if you combine two – it makes a typical picnic table! 

If you use only one as a single it provides for easy roll up for a wheelchair to join the table!  Perfect for home use or family summer gatherings. 

Picnic Blanket

For those of you wanting to enjoy the picnic blanket experience a fantastic blanket is an extra large waterproof backing with fleece top provides a great soft sensory experience that will also make sure that you can enjoy your picnic without having to worry about how wet the grass or ground might be.

An extra-large blanket will also give you plenty for room for your picnic feast and allow for additional room if you’d like to pair the Go-To Seat and floor sitter on your blanket top surface for your child with special needs.

For a traveling picnic a picnic basket on wheels is a must!

For that traditional picnic feel you may want to consider a wicker picnic basket on wheels.  Certain baskets come with silverware, dishes, cutting board, salt and pepper shakers, wine glasses and napkins which make your picnic needs complete.

Retailing depending on style from $150-$200, this choice is a bit more of a summer time investment.

For those wishing for something a little less expensive there are so some great cooler options that are on wheels retailing for around $50 and allow you to bring your own silverware and plates from home.

Tablewear

Considering little details on how to make your picnic extra special for your child with special needs consider cutlery items and dishware that would be fun and functional.

Both the ez-pz mini-mat and EasyHold products are excellent choices for children working on independent and caregiver assisted feeding.

The ez-pz mini mat retails for $19.99 and is great for picnics and home use:

EasyHold 5 piece pack retails for $34.99.

Both of these items pair well for items that are small and pack well for picnics on the go.

Plan your menu to be easy! 

Avoid messy, difficult, complex foods. 

Simplicity at a picnic can ensure a stress free and fun experience. 

Plan finger foods and plan for your child’s dietary needs and carry some wet wipes to assist with easy clean up. 

Whether you pick your peaceful patio, a grassy park filled with trees for a gentle breeze, or a sandy beach, a picnic is the perfect way to unwind and enjoy each other’s company.