Facebook – A Lifeline for Special Needs Parents

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.

Teaching Life Skills for Independent Living: Part 1

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.

Raising Children with Special Needs: “You’re Doing Great!”

From the days of having crowds of doctors and nurses asking to check how my c-section scar was healing I thought, “Yep, my body, life and thoughts are an open book now”.

This is the case everyday in our appointments, therapies and phone calls where I have to state every problem we encounter, how to fix it, how we need help to fix it.

I am at the mercy of the system now.

The system can save children like my daughter at birth, but they can’t necessarily continue to support them how they should – another thing I am quickly learning.

Well, they can, but it isn’t without a big fight and perseverance on our part.

I think part of it is understaffed departments, lack of funding, and perhaps an increase in children with additional needs.

You see everything seems to be about waiting lists, grants, money, permission from the people above (who even are they?! How do I get their job?).

When being assessed for new seating and waiting 3 months with not a word from anyone, the people responsible for the aforementioned seating are probably at home, with their children…who can sit fully unassisted.

They don’t see you in a heap on the floor in your front room because your back hurts so much from carrying your deadweight child up and down the stairs.

They don’t see your child extend dangerously as you twist your back to try and prevent them bashing their head on a wall.

They don’t deal with a child’s very strong extension reflex that you could liken to a fish out of water thrashing to escape.

Seating is essential.

Equipment is essential.

It is an extension of my child – it is what she needs in order to maintain a fantastic quality of life and to prevent things such as scoliosis and hip displacement.

They don’t see you up at midnight and 4 am to do an overnight pump feed change along with meds and a nappy change so as to not entirely soak the bedding (which, inevitably happens literally everyday anyway! Hence, why we own so many cot sheets!)

They don’t see you frantically making phone calls in the twenty minutes your daughter is allowing the TV to fully occupy her.

(Even so, you appear by her constantly to wipe away dribble, help her cough, reposition her, untangle her from her giving set etc)

They don’t see your frustration when you get, “user busy”, displayed on your screen 12 times in a row, or how you leave a voicemail knowing that when they return your call you won’t be able to answer.

You set aside this phone call/admin time specifically to resolve issues and tick things off a list, awaiting a call back only contributes to your anxiety and makes your day even busier.

When you are leaving countless voicemails with pediatric secretaries you know that in a lot of cases they will go home to their, “typical”, lives not needing to acknowledge that the problems they see in clinic every 4 months is your life 24/7 – we don’t get to go home from this, there aren’t any breaks.

Our house has become an emporium of physio equipment, a warehouse of tube feeding supplies, a wonderland of sensory equipment and noisy toys.

We had to work hard to get our house in the cluttered state it is and this is how it needs to be.

You may ascertain from the tone of this post that I am feeling a little delicate, a little bit fed up, let’s be honest – burnt out.

One of the things I have always had is, “Generalised Anxiety Disorder”, and this is a special needs parents nightmare.

You see, I like to know when things will happen.

I like to be able to control the situation.

I like to have it in my diary.

I like to think of every possible outcome for everything, I like to be independent.

If things aren’t how they need to be I won’t sleep – I will be weak, dizzy, shaky, over-emotional, irrational and snappy.

This is not what I need and most certainly not what my daughter needs.

Tomorrow we have a TAC meeting (Team and Child), it will be our 4th one in Amy’s little life.

At the end of the last meeting we had come up with a brilliant list of things that needed doing and I remember feeling so relieved and pleased that action was to be taken on the many things keeping me up at night.

6 weeks on, it’s the day before the TAC meeting and not one of the needs have been met.

We need help applying for social housing – our house is simply unadaptable.

We need a bed for Amy that she won’t get stuck in and need constant re-positioning throughout the night.

We need bath straps for her bath lift that haven’t fallen apart so we can safely bathe her without hurting our backs.

We still haven’t had a ph study done to determine whether or not Amy needs major surgery.

These are just a few of the outstanding issues.

It is enough that my anxiety symptoms are through the roof.

Recently the pharmacist from our GP phoned to let me know that Amy’s melatonin would now be issued by the hospital and not them.

The reason? Can you guess? Yep. Money.

Liquid melatonin is very expensive, they made a few mistakes with it too that cost them dearly (£180 to be precise).

They convinced me that it would be beneficial to the patient and assured me there would be no blips in getting it ordered.

I have since exchanged approximately 15 phone calls with the hospital just to find out how to order it.

It has taken 2 weeks but next week I get to go and collect a 6 month supply of melatonin.

One little inquiry can easily become a project in this role.

I had a very similar experience with Amy’s prescription formula.

There are days I think, “I can’t do this anymore,” but then you give yourself a little pep talk and sip your coffee.

You tell yourself, “Come on, you have no choice, this little person needs you to fight their corner.”

Then, you get back up on your feet and continue fighting.

Be it not for rude secretaries, inefficient professionals, funding, grants, miscommunications, waiting lists – this would be the greatest job in the world!

Notice by the way how I have barely mentioned appointments?

The admin involved for our children is enough for one full-time job, and that’s without considering the appointments, being an actual parent and also being yourself.

These days, come night time we are too tired to indulge in any hobbies, we go to bed early.

It’s such a shame because the bulk of my exhaustion stems from my responsibilities involving admin.

It’s not just feed prep, drawing up meds, general chores, appointments, lifting Amy etc, it’s the mental toll it takes trying to be a secretary/chief admin of the household.

I just want to dedicate this post to everyone out there who fights every day for the basic things they are entitled to.

I also want to dedicate it to those few professionals that will work with you (not for you, not against you) and will do what they can to go out of their way and make your lives easier.

I also dedicate it to the people we do this for; our children.

Without them where would we be?

I am grateful to Amy for giving me this role (much as I whinge!) because it has taught me that if you care about something enough, you will do whatever it takes in spite of exhaustion, tears, everything.

Keep at it everyone, you’re doing great.

Is My Whole Family Disabled by Proxy? – Raising Children with Disabilties

If this was a statement about my son, our special needs child, you would not be surprised.

However, from time to time, it is what is said about our daughter, our typical child.

I think people get confused.

Our daughter is fine. She is good.

She knows how to do and can do what she is supposed to do.

She is not disabled.

Sometimes this confusion comes from friends and family.

Sometimes from strangers.

But it is confusion all the same. She is able, capable, and strong.

She is her brother’s biggest cheerleader.

She is his friend, caregiver, and tormentor.

You know, sisterly duties.

So this is really about her this time.

This not about a child with special needs.

Not directly anyhow.

This is about the carryover, the overflow, the wake from having a special needs child and how it changes everything.

If we only had our daughter, folks would not comment on how well she plays with others, runs, jumps, or how nicely she draws.

They wouldn’t notice.

She is three.

These are things she does, all the time and should be doing all the time.

There is something about having a child with special needs that makes people adjust their perception.

Sometimes, it is not all good.

They have become so sensitive to your disabled child that they don’t know how to turn it off for the one or more that are not.

I know nothing practical about psychology other than what I had to memorize for college elective credit.

But maybe there is something that keeps us from making a differentiation once an association has been made with a particular group of people.

In this case, my family.

We are not all disabled.

Just our son.

My wife and I get tired.

But what parents don’t?

It is not some special level of exhaustion held out separately for parents with special needs children.

It’s the same exhaustion that parents with a screaming newborn have.

Might even be a little easier sometimes. My son sleeps through the night.

So there’s that.

I grew up with a friend who is deaf.

He has the best sense of humor and it serves him very well in life.

You’ve heard about people or seen it first hand, who yell at the deaf in an effort to make them hear.

How silly.

As my old friend would say, “I’m deaf, stupid, stop yelling”.

My advice for the peripheral folks to the special needs family in your life?

Use the same logic, but for the non-disabled members of that family: “We’re not disabled; you can act accordingly”.

Our son is disabled; he deserves the best you have to give him.

Our daughter is not; she deserves the best you have to give her too.

That might mean you treat them differently, and that’s OK.

Thrown In At The Deep End: Being A First-Time, Young, Special Needs Mother

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.

“What Ifs..?”, “What Onlys..?” and The 10 Things That Make Me Happy!

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.

My Rant About Toilet and Changing Facilities!

He is a non-walker, he uses a wheelchair, pushchair and special (Tomcat) trike when we are out and about.

He is partially potty trained.

By that I mean on good days we get most of ‘it’ in the special potty or loo – on bad days I run out of clothes for him!

Even the best pull-ups don’t contain the accidents.

So we frequently need the use of disabled toilets and changing facilities.

But we’ve actually stopped bothering trying to find a disabled toilet now if he needs changing.

Not because they are not available, but because they are simply far from good enough.

To be honest, I’d say shocking!

So far I’ve only come across one in my five years as a special needs parent, that actually caters for my disabled son’s needs.

But that was at the Fortune Centre, a specialist disabled riding facility with residential students with special needs, so they had to have one and it was brilliant as you’d expect.

With a remote controlled full size changing the bed, heating and wonderfully clean.

Bravo them.

Seriously brilliant.

But that is it.

The grand total is one.

So how is it possible for this to be such a huge problem?

Surely disabled toilets should cater for the entire spectrum of those they are ‘trying’ (and I use that word very loosely) to include?

Surely they must be suitable for people like us?

The reality is disabled toilets/facilities are either for adults who are perhaps slightly less mobile than they used to be, or babies (apologies – I know that is a huge generalisation).

My amazing little man is neither of those! And so the facilities don’t cater to ANY of his needs!

He is too big to lift onto a baby-changing drop-down unit, even if it was long enough to hold him (they are at least 30cms too short for him now!).

And how degrading for a little boy who is about to start school.

The last thing he wants to feel like is a baby.

So I’m sure many of you are only too familiar with the outcome of this one.

We have to lay him on the often pee-soaked floor if we change him in a disabled toilet.

I hate myself every time I have to do it.

I pray that I can figure out a way to clean him standing up, but at the moment he’s simply not strong enough for me to do that.

And so the car boot is normally the only other option (if we have it nearby at the time).

Again, who wants to be seen bare-bottomed lying in the car boot.

And who should have to get that cold and upset just because their bladder and bowel can’t physically function as well as the person would like??

I certainly would not wish it on my enemy – well except maybe the lady that keeps parking in the disabled spot with no blue badge that I told you about!

Some of the worst places I have encountered have been shops and shopping centres.

None of our local supermarkets is anywhere near up to standard.

In fact, I would avoid the toilets at all costs in our local ASDA!

Our local pubs and restaurants are terrible (laughs as if she gets to actually frequent them).

It’s the summer holidays and it would be nice to enjoy the occasional pub lunch without worrying about changing facilities though!

Days out are very tricky because all of the lovely places our little people like to frequent just simply do not get it.

The best we can hope for is that the baby changing facility is not one of the drop down units and is a mat on the top with the sinks.

Sometimes they are just long enough if we put something down under his head to elongate the changing area…. but still….

really, in this day and age, that is just a joke and it will not be long before even that is impossible.

My heart goes out to those parents and adults who are already beyond the stage where they can just about make do.

Life shouldn’t be like this.

I feel like this is a basic human right that is being completely denied from our boy.

When really it’s not rocket science.

I mean come on.

It doesn’t take a lot to figure it out.

And I’ve not even touched on the issue with the actual toilets themselves in these facilities.

When Hadley does sit on a toilet he needs a lot of physical support and so cannot use a standard toilet seat.

Even just a drop down smaller seat would make life just a tiny bit easier.

Places that I intend to tackle personally include our local premier league football club…our son is really getting into football and the club prides itself on being a family club and on having a large disabled fan base.

Yet not even a baby changing unit exists at the stadium. Just a loo.

So we have had to deny Hadley the chance of going to football with his footie-mad Grandads’, just like his friends do unless he wears a nappy.

And in the hope that he doesn’t need changing.

The local supermarkets.

The local pubs and restaurants.

The main tourist attractions in the area.

Although in fairness, there seems to be a little more effort made by those in the tourism sector, with more disabled toilets and lower cisterns for kids in some places, but they are still very uneducated and huge improvements need to be made to cater for those who need changing facilities.

The list is endless.

But the real problem goes higher up.

At our son’s preschool, we had to make do with the floor in the disabled loo, that was left in a despicable state by the mums and toddlers group that used it too.

There was a toilet with some drop down rails, a shower, and a drop down baby changing unit, but nothing suitable for changing Hadley.

So the floor it was.

This was not the preschool’s fault.

They certainly didn’t have the money to convert the room.

It belonged to the community centre anyway.

So it’s the local authority that sucked and didn’t care.

What’s added to my frustration in this matter this week is that our son starts school this September.

He is going to our local mainstream school and will be the only child there with a physical disability who will need changing facilities.

And do you know what?

Apparently, the Council can’t find a supplier to adapt the disabled toilet to suit Hadley in time for him to start school.

They have known about this for ages and they have more paperwork to support the need for this facility that you can shake a bloody stick at.

Including his statement which has been agreed (by them!!!) for months now.

There is supposed to be a hoist and changing bed going in as well as a better loo and rails.

So Hadley will have to go through the stress of making do with a floor somewhere in the school rather than the privacy that he should automatically have, all because their preferred suppliers are too busy!

That just says it all, doesn’t it.

If our own local authority doesn’t understand the importance of this sort of facility and the dignity that should be a given for somebody like my little man, then it just goes to show why we are encountering this everywhere.

Why society in general just does not get it!

It makes me feel very downhearted that for such an incredibly forward-thinking nation, we can’t even get this right!

I must add here that this is nothing to do with the school and the head teacher, who has been absolutely exceptional in making us and Hadley feel included and looked after.

Their hands are tied and this is the local authority ruining it!

I fear that unless enough of us make a point of highlighting the issue, it will be a very long time before we see a definite change.

Unless, of course, somebody gets into a position of authority with a disability in the family.

They’ll soon think again……hmm….not sure I can fit in running the country as well as being a special needs parent!

To find out more about the Firefly’s Space to Change campaign to improve toilet facilities to meet the needs of special needs families click here.

How Special is, ‘Special’?

He is in the process of toilet training.

He rarely, if ever, needs changing while we are out, but he does need to be taken to the toilet – which presents me with a dilemma.

Are we entitled to use accessible or ‘disabled’ toilets, or not?

It is difficult with the buggy to use the standard cubicles in the ladies toilets, especially if I also need to go.

Although baby-change cubicles are big enough to accommodate the buggy, Freddie is not a baby, and not all have a toilet.

When I do find one that does, I often get dirty looks for having occupied it when my child is obviously neither a baby nor toddler.

I also get dirty looks when using the ‘disabled’ toilet, too – from those who just see a woman with a child in a buggy.

To be honest, I’m not sure which cubicle we belong in generally, in life.

My son has Down’s Syndrome, with associated developmental delay and learning disability.

He has a Statement of Special Educational Need and goes to a dedicated special needs school. His behaviour is sometimes unusually challenging.

On the other hand, he can walk, and talk, and feed himself.

He is gradually learning to do most of the things that typical children do, albeit at a much slower pace.

He doesn’t (touch wood) suffer frequent bouts of ill-health.

He has never (touch wood, again) been admitted to hospital as an in-patient since he was discharged from the NICU six weeks after he was born; nor has he required surgery or other complex medical procedures so far.

We don’t need to use any specialist equipment (other than the buggy).

Parents of ‘typical’ children say things like: ‘I don’t know how you do it, I couldn’t’.

‘Special needs’ parents seem to say: ‘You don’t know you’re born, we have it way worse than you’.

Each community thinks we belong in the other.

Neither really accepts us.

It was even worse with  our elder son (who has Asperger’s) – we were patently not quite ‘typical’, but not atypical enough to qualify for any specialist help or support.

We had to fend for ourselves as best we could in a strange and lonely wilderness.

It is like we have fallen down a crack in the pavement between the two, into some strange nether world that only we inhabit; outcasts with no tribe to call on for help when we meet with monsters.

7 Emotional Wonders of the Special Needs Parenting World

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.