We were so excited and amazed by what a computer could do!

The use of floppy discs, diskettes, cd-roms, chat rooms, email, paint and drawing programs, educational games like the JumpStart series, and surfing the Internet all became a part of the regular, everyday routine around here!

Computers have evolved and upgraded so much now, that I am even more amazed at everything they can do and have come to mean to us.

In fact, computers are now so much a part of and important to our everyday lives that I wonder just how we ever survived without them.

The possibilities for computers to assist people with special needs, especially for those with communication issues seems almost endless.

Just as everyone else uses computers to communicate, find information, earn educational degrees, and entertain themselves, so do the disabled, though they may need a few special tweaks made to their computers or special equipment to do so.

Please permit me to be so bold as to suggest that it is quite likely many individuals with disabilities who are phyisically and cognitively able to do so could benefit from learning the following basic computer and Internet navigation skills.

Basic Computer and Internet Skills:

• Turning on the computer

• Using the keyboard

• Navigating the desktop

• Learning to spell favorite websites’ names

• Learning to spell the names of the people they want to communicate with

• Using email, Facebook, Skype, and/or other favorite social media choices

• Using Google

• Using YouTube

If your special someone is not capable of learning these basic computer and Internet skills, do not despair because there are so many other communication options available for them.

Advances in the assistive technology market have exploded in recent years making all kinds of technological devices, hardware, and software available to help the disabled!

Special Needs Technology:

• Voice activated typing programs

• Speech recognition software

• Special computer access methods for people who cannot use a keyboard

• Dynavox

• Communication apps for iPad

For the sake of brevity, I will not go into specific details about such devices and equipment, but I will include the link to one of my favourite assistive technology websites below.

Resources for Special Needs Technology

Please consider the following suggestions and Questions to ask yourself when deciding upon the first self-help skill to target:

• Begin observing your child as he or she goes about his or her typical activities of daily living.

• What self help activities are you performing for your child that would make life easier for you and your child’s future caregivers if he or she could do them him or herself?

• Which self-help skills has your child already accomplished?

• What skills has your child not yet achieved that is at roughly the same or just a little bit above the level of ability as the skills they are already performing?

• Has your child ever expressed an interest in learning any new self-help skills? If not, now is the time to talk about how fun doing things for him or herself will be and how proud you and your child will be when he or she learns to do more for him/herself.

• What self-help skills do you realistically think your child is capable of learning?

• Ask your child what he or she think is the most important skill to learn first. I suggest leaning towards a chore that will be simple enough for your child to master quickly. There’s nothing like success to motivate us to keep on learning and achieving new skills!!

Model the skill: Once you’ve finally chosen your child’s first skill to work on, go ahead and model each step necessary to accomplish that skill successfully.

• Be sure to have all the materials needed to teach the new skill in place before trying to teach how to do it.

• Many children with special needs are visual and hands-on learners. Going through the motions, with your child, of each step required to learn the new skill is a must!

• Children who have auditory or language processing disabilities may not comprehend lengthy verbal instructions. For these children, I highly recommend displaying photo instructions or, if your child can read, have written directions made up for them to go over. Begin with little baby steps. Break down your target skills into incremental steps.

I’ll use the skill of replacing a dead light bulb as an example to explain what I mean!

1. Turn off the lamp

2. Unscrew the light bulb counter clockwise

3. Throw the dead bulb in the garbage

4. Get a new bulb

5. Screw the new bulb into the lamp socket clockwise

6. Turn on the lamp Rewards: Should our children be rewarded for working on self help skills?

I personally believe that a little praise and the satisfaction of a job well done are the best kinds of rewards.

However, if you think a little extra motivation will make the difference in whether or not your child is willing to put in the effort required to learn a new skill then a more concrete reward may be in order, such as:

• A new toy or gadget

• Playing a favorite game with mom or dad

• A ride on the carousel

• A favorite edible treat

• An outing to a favorite destination

• Staying up an hour past bedtime

• Watching a favorite TV show

• Extra computer time

Check back later for Part Three: Computer Skills for Independent Living

Mainly it seems to be used for sharing selfies, keeping up to date with family and friends, checking in at posh restaurants etc

Everyone has their own personal reasons for using Facebook, but for a lot of people, it’s become a lifeline.

Since having my son in October 2012, the way I use Facebook has drastically changed.

My previous posts had all been pictures and status’ from nights out with friends, complaints about how boring college was and how ‘hard’ life as a teenager was (HA, It was about to get a whole lot harder).

When I was 19 I fell pregnant with my son and had him later on that year.

When my son was born he was diagnosed with HIE – grade 3, a severe lack of blood and oxygen to the brain.

We were told by doctors not to expect much from him and just told to, ‘wait and see’ – if I had a pound for how many times I’d heard that phrase!!

So, whilst still in NICU, me and my partner started to google HIE, cerebral palsy – literally any word we could to get us some information or hope for our future together as a family!

We came across a couple of private Facebook groups, I was SO happy to find these people, I quickly sent a request to join and that’s when Facebook became so important to me.

These forums had around 1000 people on them.

1000 people who had either been through the same or similar to us.

Some much further into their HIE journey than we were.

They gave us advice, hope – acceptance.

Now, I use Facebook for advice, support, reassurance or simply just to find someone to speak to when I’m awake at daft o’clock in the morning (which is a regular occurrence!).

I am now a member of several forums of which I’ve gained great knowledge from (thanks guys!), I’ve, ‘met’, new friends, some being as far away as America or Australia!

I have people who I know I can rely on for answers or even just educated guesses!

It’s been a passage for me to release my anger at life on bad days.

A place to share my sons accomplishments, inch-stones and milestones to people who just, ‘get it’, on the good days.

A place to feel accepted as a confused, first time mum thrown in to the world of special needs.

I’ve also found out about many different therapies and techniques through Facebook advertisements or through the forums and groups, then I can go along and ask others their experiences and opinions!

I found out about blogging for Firefly, a place where I can write down what I’m feeling, when I feel like my heads about to explode!

My personal Facebook page has very much turned into my sons – it should have his name there instead of mine – he’s the centre of all my posts!

Over the almost three years I’ve been in this, ‘world’, of special needs parenting, I’ve made over 100 new Facebook friends, and I am thankful for every single one of them.

It was commonly believed that children with intellectual disabilities were not capable of learning any useful life skills, let alone academics.

Parents were persuaded by doctors to abandon their special babies into institutionalized living.

They were deceived into believing that the experts and professionals who staffed the institutions were better equipped to provide their children with the best treatments and quality therapies.

Shockingly, in reality what most often took place at the institutions was nothing short of criminal.

The sweet, precious children were not educated or treated at all, neither did they receive any therapies, unless you count electroshock therapy!

They were isolated from society, neglected and even dreadfully abused and horrifyingly tortured.

Thankfully, in this day and age, most loving parents and caring professionals agree that children born with disabilities belong living with the families that love them.

They believe that they are worthy of love and of being treated with kindness, dignity and respect.

My gratitude goes out to the disability rights pioneers who have gone before us, laboring with perseverance and dedication, winning the right for the disabled to receive a free and appropriate education and, also, to have access to all aspects of community living.

It is with this spirit of love, dignity, respect, inclusion, and the belief that all people with disabilities have the right to be taught and are capable of learning, that I have put together this list.

A few basic goals to consider when working on independent living skills with children and adults who have disabilities:

I. Eating skills

• Drinking from a cup
• Using a spoon
• Using a fork
• Using a knife

II. Toilet Training

III. Dressing skills

• Removing pants
• Putting on pants
• Putting on socks
• Putting on a shirt
• Putting on shoes
• Tying shoes
• Zipping Buttoning

IV. Washing Up Skills

• Drying hands
• Washing hands
• Washing Face
• Brushing teeth
• Bathing and/or showering
• Brushing hair
• Washing hair

V. Basic Cleaning Skills

• Making bed
• Changing the bed
• Sweeping
• Vacuuming
• Doing laundry
• Cleaning bathroom

VI. Food Prep Skills

• Making sandwiches
• Preparing snacks
• Using a microwave
• Using a stove
• Using an oven
• Washing dishes

VII. Academic Skills

• Reading basic, survival, sight words
• Telling time
• Using Money

You can read part two of Teaching Life Skills for Independent Living here.

I got pregnant a month after my 19th birthday, it was a huge shock, but a welcomed one.

I knew from that moment my life would change forever, but I never thought for one second I’d be living the life I am now.

Whilst pregnant, me and my partner still enjoyed days out together, trips out for our tea or things as simple as sitting down to watch a film together.

We enjoyed shopping trips, picking out cots, clothes and everything else a new baby needs.

We excitedly bickered daily over things such as whether the baby would be a mummy’s boy or a daddy’s boy, what he would enjoy doing, who would teach him to ride his first bike, take his first steps, teach him to swim etc?

We had no idea how hard any of those ‘normal’ things would turn out to be.

I was 19 at the time my son made his dramatic entrance into the world, and I had to grow up, literally overnight.

Born not breathing and subsequently going on to spend 14 long days in NICU, I was certainly thrown into the deep end.

Relying on monitors and machines to stay alive, the baby I should’ve been holding close, smothering in love and kisses, was laid alone and cold on the cooling mattress in his incubator.

The days I expected to be cuddling my new baby, showing him off to family friends turned out to be the days I spent watching my new baby fight for his life, with no visitors except for two hours a day for grandparents.

Days I had anticipated to be filled with congratulations cards, balloons and happy people became days I were receiving sympathy cards, “Thinking of you during this hard time”, from people who didn’t know what else to say.

2 months before my 21st birthday, a time that I’d always thought would’ve been celebrated. My son was diagnosed with spastic quadriplegic cerebral palsy.

It didn’t change him as a person, he was still the same little boy I’d always known and loved. It changed me though.

Again, I felt like I’d taken another massive leap into, ‘adulthood’ – not many 21-year-olds have to deal with all this.

The big words; “diagnosis”, “prognosis”, the worry and fear for the future.

3 weeks before my 21st, my son suffered a prolonged tonic colonic seizure.

It lasted over 50 minutes and nearly took my precious boy’s life.

Again, this was something no new mum, young mum or any mum for that matter, should have to see.

Recently, he got the diagnosis of severe autism.

We’ve also been told he needs a gastrostomy inserting to help with his feeding issues.

How does my brain, that was once filled with, “What to do this weekend..” questions, deal with all this information?!

I’ve written this as a lot of the mums I meet on Facebook forums relating to my son’s conditions etc, are all older than me, I know I’m not alone, but I feel it a lot!

I’m not usually one for saying, “Things happen for a reason”, or the, “God chose you”, sayings.

However, I do believe my son and his, ‘problems’, have changed me as a person.

He’s made me stronger.

He’s made me wiser.

He’s made me aware of so much more than I could ever have imagined.

He’s made me, me.

We are permanently tired, aching from lifting, exhausted from sleep deprivation.

And that’s the time our minds go for a walk into the darker recesses of our psyche and start to poke things that should be left to sleep.

Having no firm diagnosis is incredibly hard and it is too easy to think this could be due to something you did, or didn’t do. That if only you’d done x, your child would be OK.

At times my mind is a whirlwind of grief, anger, fear, disappointment and loss.

People told me and Sam’s Dad that time is a healer, we’d overcome the grief and move forward as a new family of three.  Time does heal and it has done, but I don’t think we will ever fully stop grieving.

Because every so often when a friends child does something new, or when my wonderful niece wins a race at schools sports day, there’s a little voice in my head that takes a deep sigh and whispers, ‘what if….’.

The other one is more self-pitying, ‘if only…’

This weekend we had my family round with my niece. This child is incredible, she adores her cousin and doesn’t view him with pity, or see him as anyone other than the wonderful little boy he is.

She keeps telling me she’d really like MORE cousins, and I keep thinking right.

But the truth is it hurts to see how much less Sam can do than his peers.

And the, “What ifs..?” keep coming to haunt me.

It’s getting a little easier now, after finding out that Sam almost certainly has a genetic basis for his issues I know it’s not specifically something I did that caused this…

But the guilt is still crippling because I know that we gave him his genetic makeup. And with it any faulty/damaged genes that he may have inherited.

It feels like I’m on some sort of merry-go-round, where my brain struggles to accept that some things just ARE, and all that can be done is to accept them and work with it.

Ever thankful for Facebook, today it has given me more than a little bit of peace – being able to chat to people I may never meet but who share the same battles and triumphs as me and mine is more than cathartic.

It’s essential to my sanity.

And today there was a little link to remind us of ways we find happiness daily; many were lovely and simple, live well, eat well and be kind to yourself being the main focus.  And it got me thinking.

Over the past few years we’ve said goodbye to far too many beautiful, brilliant people (both children and adults), often taken before their time, and while that heartbreak reminds me of how fragile we all really are it also serves to reinforce how precious life is.

I get tired of people who constantly comment on how hard our lives must be.  Or how difficult it is.

Yes, it is difficult and, frankly, it’s all but bloody impossible to keep going at times; but there is so much joy, laughter, and fun in there too…  I’m bored of being miserable.

So, here’s 10 things that make me happy:

1. Spending time cuddling my boy. Nothing more complicated than feeling his little body close to mine, feeling the rate of his breathing and smelling this perfectly formed little miracle nestled in my arms.

2. Walking the dog. Just walking really, as long as its outside in the fresh air.

3. Jumping in puddles. Sorry, but there is a kid inside me that still *loves* jumping in puddles. If I can splash my husband at the same time, even better!

4. Reading. No, I do not mean Facebook. Or Twitter. I mean ACTUALLY reading. Just allowing myself to get lost in a book is therapeutic enough.

5. Doing some form of craftwork. OK, I have my own cottage business doing jewellery and crafts, but the rule is simple. Find something you enjoy doing and do it.

6. Watching a movie. With popcorn. The popcorn is non-negotiable.

7. Breathe. How many of us actually breathe properly? I mean *really* breathe – till you feel like you’ve filled your body with air, then slowly breathe out again? Try it. It relaxes all the main core muscle groups and tops you up on oxygen. Can’t be a bad thing. Ditto to singing

8. That smell after rain.

9. Spending time with my other animals. Not just the cats and dog, but the fish and the chickens. If I’ve had a really rough day, 5 minutes spent watching the chickens as they happily cluck their way around the garden always makes the world feel like a better place.

10. Being kind to others. Sometimes a simple smile at a stranger is all it takes to turn someone’s day from bleak to brighter. Be mindful of other peoples moods, they may also have just had the day from hell.

There. Feeling better about life already.

Too often we read articles about the lows of special needs parenting. The sadness, envy, guilt, anger, despair, frustration, anxiety: it reads like a list of 7 deadly sins.

It’s entirely understandable to have these feelings: we all do, and I agree that it makes us all feel comforted to know we are not alone in having these feelings.

We even share and repost these articles on social media in a vain attempt that the rest of the world might have an insight into our lives!

However, I believe it is really important to recognise and celebrate the incredible highs that we experience too.

I also think it is crucial that those people close to us are aware that we have these feelings, and that actually, life IS good.

Before entering the world of special needs I would have looked upon a family such as mine with pity and sympathy, and I would have felt relieved that it wasn’t me that had been dealt that hand.

By sharing our positive experiences and emotions, the people around us are all the better for knowing that we don’t need their sympathy.

That in fact, we experience feelings that they do not, cannot and will not experience.

And actually, it is them that, at times, should feel envious of us.

And this is why:

1. Joy

When your child achieves something that six months ago you could not have dreamed they could achieve, that feeling of exhilaration is amazing.

It is often the most minor of things, but to you, it represents so very much.

There is a definite incremental shift in our capacity for experiencing excitement from everyday life.

I suppose it’s simply an enhanced appreciation of the joys of life resulting from the awareness that nothing can be taken for granted.

The absolute jubilation I experienced the very first time Jenson demonstrated the coordination to bash a xylophone with a beater would challenge the ecstasy experienced by a lottery winner.

2. Pride

I am so proud of Jenson and I frequently show him off.

True, the feats that I am demonstrating to others would be easily overshadowed by Jenson’s peers.

However, as parents of special needs children, we have carte blanche to show our children off when they achieve the most innocuous of things.

This is an extra special bonus that came with having our children.

At two and a half, while Jenson’s friends are learning the third verse of, ‘Mary had a little lamb’, I am proudly displaying his new skill of clapping his hands.

3. Humour 

It’s 6:30 am and I have been up for one hour.

I’m wearing yesterday’s underwear and bags under my eyes.

The to-do list is longer than my arm and we have run out of Jenson’s prescription.

Matt is running around stressed because he’s late for work.

I would pay quite a sizeable amount of money right now to crawl back under my duvet.

Lo and behold, just when I start wondering how I’m going to get through the day, Jensen lets out a chuckle that would bring a smile to the most miserable of folk.

I’m not sure what he’s laughing at, and I don’t think he really knows either.

Perhaps the animal noises coming from his toy.

Matt and I laugh in response.

Impossible not to, it’s contagious.

He laughs at us laughing, seeing the response he has caused, and feeling proud of himself, he ramps it up a notch.

We laugh louder.

He chuckles harder.

The avalanche effect is born.

We are fixed.

Today is not going to be so bad after all.

4. Appreciation

A new-found appreciation of the little things in life, such as relaxing in a café with a cup of tea, having an uninterrupted night’s sleep, or going on a family picnic that is idyllic rather than bumbling chaos.

Also, of course, the appreciation for the wonderful people in our life without whom we could not function.

5. Awe

We are in awe of our children.

The things that they have to endure on a daily basis astonish us.

Just when we are at tipping point, they pull another one out of the bag.

Their ability to absorb so much that life throws at them, whether it be physical pain, or dealing with everyday life that conflicts with their sometimes irrational requirements.

We are in wonder of their resilience.

I was dreading taking Jenson for his echo-cardiogram on his heart.

He is severely sensitive to being touched and prodded, especially by strangers.

I had been fretting over this for days, thinking over the possible ways to appease him and keep him still throughout the 20-minute ordeal and avoid sedation.

After some minor wriggling, and getting used to the cold jelly and strange probe, Jenson lay back in my arms and listened to a story.

There he stayed for the whole 20 minutes as if he subconsciously knew it was for his own good and was overriding his instincts to fight and resist.

I could physically feel his fear.

I walked away from the hospital that day in awe and wonder.

6. Humility

Through our journeys we are exposed to a realm of children with a range of different issues.

We frequently experience feelings of humility towards families that have a terribly tough time and are astounded by the resilience they show.

Equally, we are often in a position where we rely on others more than we would like; whether this is friends, family or health professionals.

We are so very grateful for the extra mile that they will go, to make our day better.

A glass of wine with a friend when it’s been a tough day, even when she was due at work an hour ago, an extra half an hour therapy when the physio’s shift is over, or a box of goodies in the post from a loved-one, ‘just because’.

Jenson took a while to settle into nursery.

He was out of his depth to some extent with all the other ‘ordinary’ toddlers running around rambunctiously.

Jenson’s key worker was aware of my protectiveness and concerns, and she would call me at the same time every day to update and reassure me.

Despite the other children in her care, she would hand him over at the end of the day with a verbal account of each and every thing he had achieved, every ounce he had drank, who he had played with, what he liked and didn’t like.

I felt so humble and grateful that she reached out and recognised my trepidation; she made those two days a week so much more bearable.

7. Togetherness

Our children have a role in our families that could not be replaced.

They provide us with a feeling of solidarity.

We go out of the house as a family, even when it would be so much easier to stay indoors, hiding from the world.

On days when things are tough, we would rather be together facing the elements, than alone, functioning separately.

On weekends, my husband loves to take Jenson to the supermarket.

This is a chore that I avoid due to my irrational fear of attracting negative attention in a situation where I cannot escape.

Matt, on the other hand, would rather be together, with his boy, and face those challenges.

His positive attitude translates into a positive experience, and they inevitably have a blast!

I love seeing their naughty looks on their faces when they arrive home as if they’ve been up to mischief.

It’s a lonely ol’ life sometimes.

Between near constant phone calls to agencies, doctors, social care and nursing teams and the rest, it’s not really occurred to me just how little I’ve actually seen of other PEOPLE this week.

Sure, I’ve spoken to a lot of them (shouted at a few) but not actually SEEN anyone other than my husband and son.

Even at work.

And despite what people say, the majority of people we interact with in our working and personal lives outside of special needs really don’t have a clue what life is actually like for us.

The very people who wax lyrical about how they want to help, and that we just have to let them know what they can do to make life easier are usually the ones who put the obstacles in our path.

The trouble is; they just don’t get it.

They aren’t being malicious, it’s just that they have no clue.

For example, yesterday I found out that Sams school holidays are 7.5 weeks long this summer….

7.5 WEEKS.

I have absolutely no idea what we’re going to do to ensure he’s cared for and safe during that time.

And yet somehow we have to carry on working because through no fault of our own we’ve had to use all our annual leave allocation up already due to hospital appointments etc.

At our most recent meeting, our lovely nurses and social worker were shocked that we’ve had to use our holiday allowance to cover hospital appointments etc; no-ones forced us to do that though, but we don’t have a choice as taking unpaid leave isn’t an option.

It is becoming increasingly difficult to juggle life and work.

Outsiders to this life do not understand what an impact special needs has on the whole family, and that needs to change. We cannot just ‘switch off’ and leave our home worries at home – they are part of us and come with us wherever we go.

Having family support makes a phenomenal difference, all too often however that support is not there or is there on a ‘we only want the fun parts of seeing the child, not the difficult bits’ basis.

Sorry, my son has severe epilepsy.

The seizures, medications and therapies kind of come together with him as part of the package.

Sadly.

It breaks me that he has this battle to fight, and it makes it so much worse when I’m having to battle for even basic carers support and rights wherever we go.

I love working, I love my job, but I’m being torn into pieces trying to split myself so many ways.

This morning our social worker called with some good news – our direct payments are being restarted to allow us agency care over the holidays.

It’s only 8 hours but it’s going to be a lifeline.

We are lucky to have a social worker who fights and fights hard for us.

We are also incredibly lucky to have supportive employers…

And the difference it makes to us is phenomenal.

It means we can carry on being parents AND feel useful.

Not everyone enjoys their job, I’m lucky that I do so for me it’s a form of respite.

And it is good for Sam to be able to get to know other people and learn that he can have fun without Mum and Dad there, just like any other child.

So, for now, it’s time for a coffee and a deep breath before the next battle starts.

At first, especially during that haze of new-born fever, you feel like your little treasure really is the best-looking baby that ever did grace this planet.

No other baby could compare!

It is a credit to you to receive these compliments, after all, you created that little cutie, out of your own DNA, and why indeed should you not feel immensely proud?!

As part of my arduous yet enriching journey through Jenson’s first few months of life, I have so far been honoured to meet many babies and children who probably, in reality, do not get showered with such niceties.

Why not? Because they don’t look quite right.

They don’t meet that stereotypical norm that we are programmed to accept and expect in society.

They don’t resemble the cute squishy picture-perfect little pickles that we see on Pampers packs or on baby formula adverts.

What makes these children less deserving of compliments?

Jenson is a very special and unique child who has a multitude of physical and developmental problems, but as fortune would have it, he is (to the untrained eye) a ‘normal’ looking baby.

And in being a ‘normal’, looking baby, he is in receipt of many a sweet compliment.

It is only since being exposed to the less fortunate children around us, that I have been less allured by these comments than I used to be.

You see, I would give anything to swap Jenson’s deep blue eyes and button nose for a brain that is developing properly.

To exchange his mass of shiny floppy hair for a straight spine.

I would sacrifice his scrumptiousness for the sake of him being able to look up at me and say ‘mummy’.

If a baby’s deservedness of praise was measured by their ability to learn, copy, play, speak, walk, then Jenson sadly would have had very few.

And it is these abilities that I would do anything for.

People who really know Jenson share their excitement with us for the remarkable progress he has made to meet milestones and climb metaphorical mountains that we never thought he would reach.

When he achieves the previously unachievable, like negotiating his ride-on car around the garden, eating yoghurt, or bashing a toy with a hammer:

It is the responses to these achievements that we really love, from people that really understand.

So compliment away friends and strangers, but maybe have a thought about the depth of your platitudes and think about what things in a small child’s life really are worth gushing over.