The Future is Something Many Parents Worry About

The future is something many parents worry about; regardless of your child’s abilities, we all worry about the future.

The future is something most parents almost dream about; we are always thinking or wondering or planning what life will be like when our children are X years old or when they are finally out of diapers or in college…

The future worries for families like mine can be very different from the usual future worries.

For us,the future must be planned over and over; we must investigate what happens when our children grow up – And that I can assure you is heartbreakingly hard.

We must ensure to the best of our ability that nothing is left to chance.

Left To Chance –

It’s something that has to be planned;it cannot be left to chance.

There’s a rush to teach them the value of money;it cannot be left to chance.

There’s a need to ensure no one takes advantage; it cannot be left to chance.

There’s an aching worry that never goes away;will he be treated well,if I were to be suddenly taken away;it cannot be left to chance.

There are plans that must be made, centers investigated for “just in case”; it cannot be left to chance.

There’s a whole other side to growing up which can fill a parent with dread yet; it cannot be left to chance.

One must imagine what could or will happen the day they become too unwell; it cannot be left to chance.

There are no college forms or worries over college fees,instead there’s a nest egg that must be saved; it cannot be left to chance.

There are decision which must be made long before they are of age; it cannot be left to chance.

There’s trust placed into agencies throughout the years,while always watching to see if they truly care; it cannot be left to chance.

There are lists of who to call and who not to bother; it cannot be left to chance.

There are unanswered questions of who will care, no matter how prepared you are; it cannot be left to chance.

Will he be ok without me?; it cannot be left to chance.

I imagine those are only some of the fears parents of children with special needs or different abilities may feel

I too, am familiar with these fears.

They are the kind of fears that sneak up on you in the dead of the night. They are the fears that force you to draw up a ‘Will’ or make a ‘plan’ for all those ‘just-in-cases’ that fly through your mind,almost on a daily basis.

My fears of the future are a little different as my son has Hunter Syndrome but nonetheless my fears of the future keep me awake too and the cycle of ‘what if’s’ can be just as relentless.

We need to start helping parents like us, help us plan a future where we know our grown up children will be understood, cared for and loved even after we pass on.

No parent should ever have to fear their child growing up.

Governments need to understand that kiddies with additional needs do grow up and with the right supports in place while they are growing up, they can lead a very full and happy life without their parents (when that time cones).

Parents spend years worrying over who will care for my child when I pass on?

This cannot be left to chance.

And, this cannot be left to the parents to carry, alone.

It’s time to start putting some funds,attention and research into adulthood services and support into aging parents fears of the future.

Again, no parent should have to fear their child growing up, but a lot of parents do.

It’s Tube Feeding Awareness Week

I read all these wonderful families stories about how much tube feeding has helped their children.Some children need the tube placed just for a short time, while others need it for longer or even for life.

My son falls into the less talked about tube feeding category – my son uses his tube for medications*.

My son needed a tube placed when he was almost 14 years old.

He needed it then because he was unable to eat; he was having many issues and swallowing was becoming very difficult and dangerous.

To us, putting a tube into our sons tummy and feeding him through it sent a clear message – our son was dying from his syndrome and this was just another medical intervention to keep him as comfortable as possible.

We had seen how boys with his syndrome got a tube placed just before they passed away, we believed at that point in time,that our boy wouldn’t see his next birthday.

We hated that tube. Absolutely hated it.

Weeks passed and we learned all the techniques around feeding and cleaning the tube.

We learned how to work the feeding pump and even learned how to clear a blocked line.

We felt more and more like nurses than parents.

It was a dark time for our little family but as always we presented a different picture to friends and extended family members.

We told them the same things the doctors and nurses had told us.

We talked about how much of a help the tube would be, how much weight our son would put on and how much healthier he would be once his body got used to the tube.

Within his first week of being tube feed we discovered Ethans medications needed adjusting and we introduced CBD oil; which was our decision after plenty of research we felt it could only help our son.

Ethan was peg fed for two weeks altogether.

He began asking for food by mouth, he began crying for food.

Ethan was given another swallow test and it became obvious that while his swallow had deteriorated that there was still a high chance he could eat by mouth without the fear of aspiration.

We began introducing a blended diet while in the hospital, reducing Ethans tube feeds to once a day.

A month passed and our son began to put on a bit of weight.

Two months later our son was enjoying a grade two diet.

A grade two diet is a blended diet cutting down the need for my son to chew,as this was a tiring exercise for him.

Two years later and we don’t hate that tube anymore.

That tube gives much needed medications to my son- medications can be very thin liquids, which would cause my son to aspirate – with the tube that worry is gone.

That tube has saved us many trips to the ER when my son has been sick and refused fluids – it is our little miracle tube that gets fluid into his little body whether he is feeling well or not.

That tube will eventually feed my son, we are in no doubt about that but for the past two years that tube has taught me to be very thankful for what it can do – it relieves worry, stress and the constant thought of did he get enough drinks today?

It gets food into my son when he is unwell and refusing food.

It nourishes his body when it’s too weak.

It takes the pressure off of him and me when it comes to eating by mouth… and yes it has taken me two whole years to accept that the tube is here to stay even if for now, we only use it for medications and fluids when required.

To anyone who’s child may need a tube, I know how scary it is.

I know how daunting it is and how that little voice in your head will tell you that you will never be able to clean the site, turn the peg, unblock the line and remember the right rate for the pump — listen to me; you will do all that and more and what’s even crazier to think is that you will be able to do all that and still go off on a family day out.

You won’t always feel like a nurse either, you are just feeding your child, differently.

I also what you to know what a difference it does make and will make to not only your child but to you too.

It will become your norm and your child’s norm so quickly that you won’t even realise how used to it you’ve all become.

Tubes are placed for many, many different reasons- don’t ever presume that your child will never eat by mouth or that this is the end for your family life as you know it.

I wasted many weeks crying over this tube being placed and really, it was a waste of time – the crying not the tube.

That tube has lifted so many of my everyday worries when it comes to Ethans care that I wish I didn’t jump to conclusions about the tube.

I wish I didn’t fear it as much as I did.

*Some children only have the tube for a short time, others for longer and others like my son, have it for medications with the understanding that it will be there when his syndrome progresses and while that’s a horrible fact; it has taken away the worry of placing a tube when his body is already too tired and too weak for more medical procedures, I am relieved my son has the tube now rather than later.

Nurses Strike

Currently our nurses are planning a strike here in Ireland, on the 30th of January.

Why?

Well, that depends on who you speak to.

My understanding is that the nurses want their pay restored to what it was before the economy crashed and they want better working conditions meaning that the government and our Health Service Executive (HSE) start hiring the correct amount of nurses.

Nurses are defined in the dictionary as – a person trained to care for the sick or infirm, especially on a hospital setting.

Oh but to me and so many others nurses are far more than that.

They are the soft embrace no doctor can give,

The warmth on a lonely hospital corridor,

The shoulder to weep upon,

The calming voice in unimaginable circumstance,

They are the explainers,

Breaking down the doctors complicated words,

They are the hand holders,

The mothers of “it’s all ok love”

They are the familiar face,

The last one you see before surgery and the first one to welcome you back,

They are the obs takers,

The note makers and the ones doctors rely on to help carry their load.

They are mothers, fathers, sister, brothers who miss their own; but would never show it upon their faces,

They can be found in homes, schools, respite centers, hospices and hospitals too of course,

They are glue, the gel, the friends we make on our toughest days,

They are special; a job many would find hard to do let alone embrace,

There isn’t a fair wage to acknowledge their work – for no one can put a price on the nurses hand that holds yours as a family member takes their last breath.

To our wonderful nurses- thank you for all you do.

Many of us stand with you.

The Internet is a Funny Place

The internet is a funny place. It brings all sorts of debates and opinions and causes a good few arguments.

This week there has been a few articles which I read.

I read the comments and then I had to walk away from the computer.

It still amazes me how worked up people get over baby changing facilities and parent and toddler parking spaces.

Yes, I am a mother, yes I have had a baby and a toddler at the same time and yes I am a mother to a child with an intellectual disability as well as a physical one and finally, YES, I am sick of having to highlight what my world is like but here I go, again…

I am amazed at all the comments demanding that those without young children be fined for using the car spaces and that the disabled bathrooms should be move inclusive to babies.

I think when you’re in the trenches of early motherhood these things seem and feel like huge injustices but really, they are not.

In what will be a blink of an eye there will be no more bums to change and everyone will be able to buckle themselves in.

That’s the bottom line, babies don’t stay babies forever…well, generally speaking, they don’t.

Baby changing facilities are in my experience, always in the disabled bathroom, which makes littles sense.

Being or having a baby isn’t a disability; it’s hard, yes- but it is not a disability.

What would make more sense to me and I am sure to a lot of parents currently having to change their babies bum in public is to let them do it on the floor of a public toilet…

Ahh, Now that caught your attention!

Yet, I am expected to change my disabled son on a public toilet floor but those with babies are expected to change their babies in the disabled toilet on a bench suited to their tiny baby’s needs?

And let me be honest, it’s at a nice height which won’t have mammy or daddy hunching over said baby.

Does that actually make any sense – mammy or daddy use a separate toilet then queue to use a disabled toilet so they can change their baby?

Yet, those like my son, with a physical disability, queue to use the disabled bathroom so they can be changed on the floor?

While their mammy or daddy’s back breaks for the millionth time that day.

No one should have to be changed on any floor anywhere.

Why not have a changing facility for babies in the same toilets that their parents use?

Place a small bench in both male and female toilets so babies can be changed- put it in a cubicle with a little extra space for buggy and there you have it-a changing area in every public male/female/unisex toilet.

Isn’t it time those with physical disabilities have access to proper equipped public toilets?

Where is the outcry from the public over this?

I can never understand why the public don’t seem to care.

None of us are immune to disability nor are we immune to a physical disability.

And now to the parking spaces- one comment on that thread was that those with the blue parking badge should not avail of these spaces if they don’t have a child.

This comment made my blood boil.

I agree with parking spaces for young kids, it’s damn hard when they are young but again it’s not forever.

Should someone be fined for pulling into one without a child?

Well, if Joe public can use a disabled spot because he only needs a loaf of bread and he doesn’t get fined, then why in the world would the same Joe public demand a person using a space for young families get fined for parking while not having a child?

It makes no sense to me!

Disabled spaces are abused every single day of the week.

Disabled toilets are unsuitable, unfit for purpose and are basically glorified baby changing areas.

Isn’t it time these things change?

Isn’t it time that a baby can be changed by either parent in a public bathroom without going anywhere near a disabled bathroom?

Isn’t it time a disabled parking space is used solely by those with blue badges and that those family spaces are used by those who need them not those who need the convenience of them?

Couldn’t family spaces be further away from the door to the shop?

It’s about the bigger, wider space rather than the distance after all.

There are solutions to all these debates; one voice-one public voice demanding baby changing facilities to get out of the disabled toilets and parking spaces to be respected.

Hopefully one day soon, I won’t have to lay my son on a public toilet floor to change him…and I will be able to use the disabled parking space because Joe public decided to park in a space not quite as ‘handy’ for him.

For more information on Changing Spaces please click here

New Year – New Battle

I have been wondering recently if it’s just me or if most parents feel that with New Year comes some New Battles.

Or New Year same old battles?

In my world, everything is a battle.

And it’s funny because when I talk to friends or they come and visit and see some of Ethans new equipment, they reply with “Well, that’s brilliant, that didn’t take too long to get either, did it?” And they mean well.

They really mean well but nobody wants to be that negative ‘friend’; God knows it is hard enough to keep any friends once you step into my world, so I normally respond with a nod and a smile.

Inside my head I am screaming that it took me a friggin year and a half, a dress size (up or down) and it’s still not suitable but it’s all they could source.

I used to tell those involved with Ethans care that things will go downhill once Ethan reached a certain age.

I told them this as a way to prepare myself and to try to get in place equipment Ethan would need before he actually needed it, if that makes sense?

This thinking and talking only benefited me. It did indeed prepare me for the decline that was always going to come with Ethan but that is all it did.

Nobody involved in Ethan’s local care ever really understood that this little whirlwind in front of them, who was screaming a song from the top of his lungs would one day lose the ability to understand, speak, walk, eat …

We are here in that ‘one day’ now.

Despite all my talking and my belief that it did help me, I still struggle with the little boy in front of me compared to the little boy of years gone by.

But, I ain’t got time to feel all that in my day to day as I am sure plenty of parents like me understand.

I have to battle.

I have to battle my innermost heartbreak just to get up.

I have to battle sleep deprivation daily.

I have to battle the stress of everything that goes on in my mind and heart daily.

I have to battle anxiety just enough to be able to smile.

I have to battle with all the services, the city council,schools, often doctors offices and so much more on an almost daily basis- not all for Ethan either as I have two other sons.

..And I am not the only one who battles daily like this.

There are thousands of families who have to battle to get their kids a school place,the right education, their basic needs to be met.

Don’t even start me on Ireland’s idea of disabled toilets, that in itself is a battle the whole of Ireland should be concerning themselves with.

Battle is a funny word because it implies someone will win.

These battles we fight- no one actually wins.

No one walks away feeling like a winner; most parents feel horrible having to battle for help and supports that their child needs in order to live, in order for them to enjoy the simplest of things in life like a safe bed to sleep in.

Just before Christmas we were finally given the green light for a sleep safe bed for Ethan.

I didn’t feel like a winner.

I felt sad.

It was and is a stark reminder of how far Hunter Syndrome has progressed within my sons body and mind.

I felt that battle was pointless as Ethan needs a safe bed, I felt it was time and energy I didn’t have to spare wasted on something every single person in this world needs – a safe place to sleep.

This New Year for me means more battles. Some old battles and some new ones.

We physically don’t have the bed yet but I am expecting it any day now…

A battle I have been battling for almost two years is an extension for Ethan.

And I will be totally honest, I started the process a whole year before Ethan really, really needed it, I did not want an emergency situation on my hands but…alas…here I am.

Ethans ability to walk has decreased so much so that I have no choice but to carry him downstairs.

We toyed with the idea of a stair lift but Ethan doesn’t like swings or anything that moves as suspiciously as a stair lift might.

He’s unsteady as it is,so the thoughts of strapping him into a stair lift not only sets us up for another unsafe situation but one that is likely to scare the crap out of a little boy who has already gone through too much.

My husband carries Ethan to bed each night and each morning I carry Ethan down the stairs.

This is an accident waiting to happen but no matter how often I ring, or how many letters of support I produce our extension is still not coming any time soon.

It is a battle I am not willing to walk away from because Ethan needs to be safe in his home.

I should not be putting Ethan and I in danger in order to get out of his bed and down the stairs. Ethans current bed is two mattresses plus a makeshift safety bar along the side to keep him from falling out.

It does mean that we’ve to be over him and try to get him up in our arms in one swift move, a move I have not mastered at all.

Ethan should be able to have a shower in his own home too but that too is a battle as his bathroom is too small for the equipment he now needs and the amount of people it takes to shower him safely.

Respite thankfully have a suitable shower so Ethan does still enjoy a shower there.

So, I will battle on.

I will be told over and over about budget and waiting lists; and I will repeat myself over and over about how time is something we don’t have the luxury of.

I will be told too that Ethan will get his extension when they can cross the T’s and dot the I’s .

I’ve been told this since this Summer; it sure takes a long time to dot some I’s and cross some T’s.

So, I will battle on.

It is always a battle.

And when they knock the wall and finally begin, I won’t feel like a winner. I will feel sad that my 16 year old son requires all this extra space and equipment.

And there will always be a certain sadness that we are even in a situation where we couldn’t provide our son with all the care and needs he requires without help from our services, government and city council.

But, like everyone else in our circumstances we will battle on this New Year and every new day that we are presented with.

What about you, what are you battling this New year?

The Christmas Party

There isn’t an email going around the office. There isn’t talk about who’s wearing what while dodging the boss.

There isn’t last years gossip floating above the crowded canteen making everyone anticipate this years gossip.

I miss it.

I miss the work Christmas party.

I miss the build up to it, the let down of it and the remorse of it all!

I even miss the hangover and the irrational fear that overcomes you when get in the next day.

There’s a social isolation that comes with being a full time carer, one that I’ve gotten used to over the years but Christmas seems to bring it to the forefront.

The isolation is more obvious. There is no Christmas parties for those of us who are carers. It would be a lonely old party if there were, I suppose.

What do people who work 24 hours a day, 365 days a year do at Christmas?

Well, most do the same thing they do all year round.

Others are lucky and get a break, get a bit of respite and get to go to their partners Christmas party or plan a night out, if they have the energy.

I am in the lucky bracket. I get respite in the build up to Christmas. I don’t get respite over the Christmas holidays but I do get to go out and enjoy some Christmas festivities. I get a break from my caring role.

I don’t have a workplace anymore nor do I have that many friends, to be honest.

I gatecrashed my husbands Christmas party, gatecrashed is not really the right word,I was invited but it’s not the same when you don’t work there (hence the feeling of being a gatecrasher) I did enjoy it and found my husbands workmates to be the friendliest bunch of people I’ve met in a long time.

Gathering friends to have a drink over the Christmas is a tricky thing,as they are all busy with their own Christmas duties and parties to attend.

I have limited free time, even with respite there’s never enough time. Sounds familiar to everyone,eh?

I often sit and think of the carers who aren’t as lucky as I am.

I think of the million reasons I don’t want to go out for a catch up or a coffee especially over Christmas.

Then I think of those carers.

The ones who don’t get asked anymore, the ones who simply can’t, the ones who don’t get respite and the ones who feel that Christmas is a spectators season.

I feel guilty sometimes that I have respite. I see so many carers without any and my heart breaks for them. It took us five years to get respite so I do know how hard it is to get; I also know how those of us who get respite feel ‘lucky’ to have it.

Fundamentally; every single carer on this island should have access to respite.

Everyone needs time off, a break, a rest…

For those of you who had or have a friend who is a carer, that friend you haven’t seen in months, even years…or a family member who can never attend a family gathering, I implore you to reach out this Christmas.

I know it takes two to communicate.

I know that they’ve shown no (apparent) interest and I know the millions of reasons why you can’t or why you’d find it hard but take it from this carer, who is very lucky to still have friends and family members that call, it matters.

That carer misses you.

They’d like to see you.

They wish they could see you but as hectic as your own life is (everyone’s is) they really, really don’t have the time to arrange and ultimately rearrange meetups.

They can’t nip in the car and spin out to you, not without organising and planning …it’s a different world, it’s a much more difficult world to live in.

It’s a world which most of you will never have to be part of yet, anyone can join.

No one is excluded, no one gets a ‘pass’- anyone can become a carer, even you.

No one is asked if they’d like to be a carer, people become carers due to love, nothing else. They are motivated by love, strengthened by love, paid with love and do it all over again and again because of love.

That carer who doesn’t get a break, who doesn’t show up to anything -they can’t, they simply can’t.

I know that’s hard to understand, especially when you’ve been inviting them and including them.

I think of these carers over the year but I admit, at Christmas I think of them more often.

Carers who are lucky to get the respite,(however little or however much,it’s all relative) still get lonely over Christmas, they still feel left out. I still feel lonely and left out- imagine how those with no respite feel?

So,my little wish this Christmas is for those of you who have a carer in your circle or family to call out, send a quick message or make a quick phone call and tell them you are coming to see them.

Trust me, they are just as nervous of you calling as you are of making that reconnection, but neither of you will regret it.

And to my not so many friends, thank you for including me for all these years, thank you for calling out to me and thank you for planning events around respite, I am very lucky x

Christmas

It’s the sparkling lights,

Soft glows reflected in their faces.

It’s the busyness,hustle n’ bustle,

Meeting friends and some old faces.

It’s the smell of wood burning,

Memories of Christmas’ long ago.

It’s the presents wrapped,

With care; surprises all in a bow.

It’s the laughter at the table,

Brussels sprouts, crackers pulled,toys laying on the floor.

It’s the jokes we’ve all heard before,

Yet we listen in for more.

It’s the ‘smile for the camera’ time,

Cheers to family we hold so dear.

It is the most wonderful time of the year,

It’s the time which brings tears,worries & fears.

It’s the sneaky memories of yesteryear,

Causing us to pause,shed a silent tear.

It’s the memories that keep them alive,

Even if our hearts find it hard.

It’s the stuffed turkey,ice cold beers,

The funny gifts for all to share.

It’s the looking to the future.

Learning to let go of the past.

It’s the slowing down of time,

Sipping wine watching kids play.

It’s all the presence of those we love,

Giving presents & igniting imaginations.

It’s about music we love,

Which only plays once a year.

It’s about the hug, the kiss,

Yep, even that awkward near miss!

It’s about reflection..thankfulness,

Never ending to do lists!

It’s about that feeling,magical and awe,

Sitting with family reeling in the years.

It is the most wonderful time of year,

Which hardly goes by without a tear.

So take the pictures, sit in the chair,

Make the memories you’ll one day hold so dear.

Happy Christmas; pause and be present for those we hold so dear.

Offended

This Christmas there’s a lot of talk about offensive lyrics in Christmas songs.

“Baby it’s Cold Outside”- which I have always believed is about a courting couple who really would like to spend the night together but due to society they really can’t, as they aren’t married.

Yes, there is another way to interpret that song today, in this day and age but this song came from the 1940s when women were encouraged to marry, have children and be good housewives.

“The Fairytale of New York” – I have honestly never really heard what the heck Shane MacGowan says to Kirsty MacColl but we all know her retort back to him and yes it’s a terrible word but I think it’s meant in jest, in anger even, another way to tell him to f**k off, at a time when people used such words in that way, again it was a different era, the 1980s.

To me they are songs and they are great songs, that’s my opinion.

To you they may be offensive as all heck and that’s your opinion; which I am ok with.

What I cannot and never will understand is the lack of anger, offensiveness (is that even a word?!) towards the treatment of our little community within society.

No one seems to be offended when the disabled parking is all used up because someone needed to “get something real quick”.

No one seems to be offended that we’ve to change our kids and young adults on the floor of a dirty bathroom.

No one seems offended that in 2018, we still have to ring venues to see if they are wheelchair friendly- guess what?

An awful lot are not.

Yes they have the standard abused disabled toilet but there’s no room for a wheelchair in the venue (and often in the disabled toilet)

No one seems offended that our children are on endless waiting lists for vital therapies.

No one seems offended that the carers of our little island are on their knees with providing care 24 hours a day with no outside help.

No one seems offended that the budget cuts to services means that there are more and more people on lists and less and less getting services.

No one seems offended that our elderly are lying in hospital beds in the corridor of our overworked understaffed hospitals.

No one seems offended that there aren’t enough specialised schools in our country for kiddies who learn differently.

No one seems offended about a whole lot of important, real issues that affect people’s day to day lives …

No one seems offended until it comes to Christmas songs.

And yes, you can tell me its inline with the ‘me too movement’ if those songs were written today, I would agree with you all but those songs have nothing to do with that movement,they are songs written from a bygone era.

The issues I’ve listed are damn good reasons to get offended, so why not get behind them instead and shout from the rooftops of how offensive it is in this day and age to treat our disabled community as second class citizens.

Welcome to the Jungle

It’s a dark, crowded, murky, heavy jungle worth cutting your way through to find that beautiful clearing.

Types of parents, I guarantee you’ll meet within this jungle of Special Needs.

The Extreme Activist –

They are going to change the whole darn system. Nothing works. It’s all crap and the people who work in the system don’t give a crap about our kids.

No amount of paperwork is going to stop them from changing the world.

Be careful of these extreme activists, they mean well but they are fierce; you can’t half-arse help, you have to wholeheartedly help. Approach these parents with caution.

These are the parents most of us admire while hoping they don’t corner us to help picket the speech and language department on a wet winter’s day.

We have no idea where they get the energy nor time from but we secretly suspect they have a lot of home help.

The Advocate –

These parents are like the Extreme Activists, only much softer and calmer. They don’t believe the speech and language department should be picketed.

They believe in emails, phone calls and meetings with those who are in charge. These parents know exactly who is who within the system.

They have an amazing ability to pause their own struggles and help you with yours. They believe help one child, help them all.

The Advocate lives within all parents of child with extra needs.

The Googler – (not to mixed up with the conspiracy theorist)

It’s easy for us all to become The Googler but we must be aware of the dangers of becoming the full time Googler.

The Googler is never without their phone, it is attached to their hand especially at meetings.

They are the ones who corrects the team when they use the now outdated term IEP instead of IP.

You know you’re not even close to becoming The Googler when you roll your eyes and think; sure it still means the same fecking thing.

The Googler, when given the chance will tell you what it is your child’s team are doing wrong. They will instill the fear of God in you if you stand and listen long enough.

They will make you believe that perhaps the private OT sessions you’ve been forking out for are nothing more than play therapy with no real results coming.

They will let you know what you are doing wrong regarding having trust in the state care provided for your child.

You need to ensure you walk away from them once you’ve discovered that they are indeed The Googler.

The Conspiracy Theorist –

These parents are somewhat similar to The Googler, except that they believe the government caused most of the conditions/disabilities our children have by insisting we vaccinate our kids. They believe our kids are different because our government tricked us.

They are not the same as anti-vaccinators, as they believe in vaccines, they just think the government picked one vaccine which caused our kids disabilities as a sort of social experiment.

The Googler and The Conspiracy Theorist are good mates who like coffee, chats and hanging out with the Extreme Activists.

The Anti Vaccinating Crew –

These parents are looking to blame. They are normally new to the special needs scene and have not been given enough information regarding the diagnosis their child has received.

They fall in with The Googler and sure it snowballs from there.

Surprisingly, they don’t really like The Conspiracy Theorist as they don’t believe only one vaccine could be to blame for their child’s diagnosis.

It’s best to just smile and nod when they tell you that you should not have vaccinated your child. They don’t like to be debated despite them telling you that they can debate it; just don’t.

The One With Tight Lips-

Oh yes, these parents are plentiful. They have all sorts of supports which meet their child needs. They have home help, home adaptations, a support worker, resource hours…the list is endless.

They will sit and listen to you complain about trying to figure out who your social worker is but not one word of advice will escape their lips as deep down they believe if they help you they will lose some of their supports.

Once you meet one of these parents you must learn to bullshit them. Leave them thinking you’re getting more support than them, it’ll drive them nuts.

The Dab Hand –

These parents send you emails, phone numbers, a directory of who is who as they’ve been in this jungle awhile and hate the fact that nothing changes.

If you don’t know how to access supports, home help… these are the parents that along with The Advocate, will leave no stone unturned to help you – the reason they do this – it’s simple, they know the stress the system can cause so they try to ease that for you.

The Dab Hand isn’t to be mixed up with the Advocate, they simply pass on what they know and who they know to you when you ask. They share their experience and what different route they would have taken had they known then what they know now.

The Ostrich –

These parents are struggling and don’t really want your help. They would rather be left alone.

They are searching for second opinions and third opinions and paying a lot of money to be told over and over again that ‘Johnny’ is ‘different’.

They find it hard to accept and don’t feel like they belong in the jungle with you. And that’s OK.

Don’t let them bring you down, they will eventually see ability before disability. Pat them on the back and move on until they begin a conversation. It’s important to mind yourself through this jungle too.

The RubberNecker –

Ah they have their heads stuck in everywhere. They know you before you were even introduced. They’ll be chatty, friendly and full of questions regarding your child and services.

Be careful, they are comparing what services you are getting to what they are getting and are already composing a strong email to the same service provider using YOU as the reason they are emailing.

You can tell they are The Rubbernecker as they won’t willingly share the same information they are asking from you, not unlike The One With Tight Lips, eh?

The One Upper-

Ah yes, The One Upper. They want to hear your story, so they can tell you theirs. Theirs will be worse. They will have had all the issues and trauma you will have had but theirs will be worse.

Be careful of these parents, they make you feel ‘bad’ for saying you’re struggling.

They will make you think that you shouldn’t feel a certain way. Don’t let them.

Smile and walk away. Go and sit beside The Advocate or Dab Hand.

The Happy One-

Yes, these parents exist in this journey.

They are normally The Dab Hand too, but not always.

They have been there, done that and can now see the humour in most of it. They recall stories about their own journey which will make you laugh, cry or stare in awe of them.

They are extremely approachable and helpful. They listen to you and comfort you as best they can.

They remind you that life is what it is and we all might as well get on with it. They are full of life and fun yet can be serious when they need to be.

They also know The Advocate and The Dab Hand quite well and will introduce you to them. They will let you know who is who within the parenting group.

The Politically Correct One –

These parents are quite serious and take the words we use when describing our kiddies very literally.

It is easy to offend these parents by using words that they don’t agree with.

They are not shy of telling you that ‘differently abled’ is much more socially acceptable than saying ‘disabled’.

And maybe it is, but most of us have a lot more to be concerning ourselves with rather than what words we use.

However, we all have a little bit of The Politically Correct One in us, even if we don’t like to admit it.

For example, imagine someone referring to your child as a ‘R’? Yep, we all turn into The Politically Correct One along with The Extreme Activist right there and then!

So, there you have it, just some of the parents you’ll meet along in the jungle. Some will help pave a path for you while others will run ahead and not look back.