Life As Alice Blog

Blog

The reason why your friend with a child with 'needs' hasn't been in contact recently...

A: Because their head has exploded with stuff they have to remember!

I often hear people grumbling about friends not understanding why they can't do everything they used to and how boring people have got now they have children. The case is even more exaggerated when the friend in question has a child with 'needs'. Whether it be physical, mental or medical or a mix of all three, parents with children of 'needs' quite frankly have more to think about than what to have for tea or whether they'll make it to your birthday bash next week. Usually, especially when medical needs are involved, planning in advance is completely pointless, it just takes one tiny sickness bug, blood abnormality or backwards turn to cancel any of it anyway. We don't get chance to reply to a message because by the time we start to do so someone starts bleeding or you have to get out of the door for your 7th appointment that week. When you finally remember it's 3 weeks later and you've already pissed people off

Β 

Your brain can only hold so much...

Below is a list of things that parents have going on in their heads and then the same list that parents of kids with 'needs' have going on, it's the same list really just very much plumped out with stuff, stuff and more stuff. Take a look and then pick up your phone and give your mate a call. Believe it or not just a tiny gesture of a school pick up, a shopping trip or cuppa can make a HUGE difference to their lives.

Even if you don't read it all, and I wouldn't blame you it's LONG, just scanning passed it shows you just how much goes on daily in our heads and houses. 

*disclaimer* all families are different, this is based on my own situation which is far less than, and often more than, others situations. The normal parent's list could be added to and taken away for each different family too, it is a brief run down, try writing your own, it's a great therapy session to help you realise you've got a reason to be stressed.


What goes on in a normal parent's head...

  • Love
  • Happiness
  • Housework
  • Work
  • Money
  • Mortgage/rent
  • Childcare
  • School
  • After school clubs
  • Behaviour
  • Milestones
  • Common Illness
  • Medical
  • Progress
  • Holidays
  • Christmas/birthday presents
  • Friends
  • Life
  • Mental Health
  • Their Future

Conclusion = Tired


What goes on in a parent of a child with 'needs's head...

Love - A parents love knows no bounds, we love our kids no more or less than you do yours! Nothing special here, move along.


Happiness - Our lives aren't all full of doom, gloom and bad days, we have as much happiness as you, except we appreciate the small things that little bit more and they're often hidden from public view.


Housework - The usual brain numbing fight in a family household as to who does what and when.

Work - The usual work stresses however we have to cope with the following...

  • Finding a job that fits around our child's needs OR keeping hold of the job that we have and praying they understand your child's needs
  • Keeping up with deadlines and juggling ALL of the list below.
  • Missing deadlines
  • Days off for illness
  • Days off for hospital appointments
  • Weeks off for hospital stays
  • Last minute phone calls saying you're not coming in
  • last minute cancellations of meetings etc
  • Fear of getting sacked
  • Fear of taking the piss
  • Fear of living as a one wage family/on benefits

Money - that brings me to the money situation

  • no job, means a 1 wage family which means hardship OR
  • no job means benefits and
  • benefits means forms and hoops to jump over, minimum money coming in and stress
  • Also DLA, Disability Living Allowance or PIP which is the new version
  • DLA means forms that are like writing the life and times of how shit things are for your child
  • They often turn you down for DLA and you have to fight for it
  • Which means appeals and loads more paper work 
  • If that goes wrong then you go to panel... this can take 18mths to fix in which you get no money until they agree... yeah I know, it's all massive bullshit right?!

Childcare - Always a worry for any parent and their cash flow.

  • Finding childcare
  • finding the very low % of childcare who are able to take on children with needs
  • Finding one who actually has a place
  • finding childcare who you trust with medical issues etc

School - The school worries are huge for any parent, but to go with all yours we have these hurdles to go through too...

  • Which school? - normal parenting worries
  • Mainstream or Special school? (which will help them the best?)
  • which will give them a better future?
  • Do we do half and half?
  • can the teachers at mainstream cope with their needs?
  • Statement of educational needs - yearly meetings and paperwork
  • the statement meetings are like a room full of people telling you how far behind your child is compared to their peers. It's heartbreaking and I for one dread the day every time.
  • regular school contact
  • regular school arguments over medications etc
  • Home/School book to tell you what your child is doing because they can't tell you.
  • Teachers failing/Teachers being amazing
  • inclusion
  • bullying
  • making friends
  • not being invited to parties
  • upset, frustration and full blown melt downs.

STRESSED READING THIS YET?... THERE'S MORE...


After school clubs - the wanting to do karate/swimming etc but not finding somewhere that will take a child with needs...

  • missing out
  • disappointment etc

Milestones those pesky little things that torment all parents

  • When every child around you the same age is sitting up, crawling, walking, running etc etc and yours isn't... It's absolutely heart breaking. 
  • They do it in their own time, but try telling your belly that as it sinks when they don't get there.
  • Stress over this causes huge upset for many and just another thing to worry about.

Behaviour - Something that we all have to conquer at some point but we have the extra...

  • understanding why
  • learning how to stop them before they happen
  • planning ahead to do the above
  • dealing with massive meltdowns
  • often violence is involved
  • often it's in public
  • often people judge you as a parent, watch and tut
  • often you cry
  • often you can't ever see an end

Progress - progress with a child with needs in whatever form is often celebrated like we've just won the world cup. It might seem trivial to you but for us it is a mountain we have conquered.


ANNNND MORE...


Common Illness - Something all kids get but what happens in other households when you allow your kids to school ill... (not that I'm bitter at all)

  • A simple cold - can lead to chest infections, chest infections can lead to hospital stays, chest infections can also spread and lay on their heart, their heart may be broken already and struggling but now more so which is also deadly... 
  • A simple sick bug - can lead to hospital stays, medication slip ups, more than likely dehydration and weeks to recover rather than the 24hrs the usual child takes, as well as the simple cold shit above too.
  • This all leads to time off work, school and often no income for the family.

Christmas/birthday presents - something that should be so easy but is yet so hard as the age range of what they love isn't the age range of their actual ability. Everything is patronising or too hard, creating stress, frustration and break downs... Always ask what they want or need before buying!


Their Future - You can't think about their future because you have no idea wtf is going to happen between now and then

Medical & Diagnosis - This is very much something that rules our lives.

  • Diagnosis... Something in which can be a simple thing done at birth or a complex few years of tests appointments and hell. 
  • GUILT... something all parents feel when they feel like they can't fix something their child is suffering with. Is it my fault? is it their fault? Are they suffering? Why can't I help them? Why won't it go away? Why me? Why them? Why us?
  • Hospital appointments
  • Hospital appointments
  • Hospital appointments
  • More hospital appointments
  • Fighting over giving medication 
  • change of medication 
  • medication routine
  • new diagnosis, new routine, new fight.
  • New Doctors
  • New Nurses
  • Having to explain every tiny bit of their medical history all over again, every, fricking, time!
  • Hospital stays
  • surgery
  • travelling to and from hospitals
  • Hospital food
  • hatred of hospitals
  • not to forget your other children's childcare etc too whilst all this is going on!... yep we can't forget about them!

AND MORE...


Holidays - Oh the simple enjoyment of a family getaway

  • it's all in the planning - where to go that suits their needs and yours
  • where the nearest hospitals are
  • does that country understand the medical and physical needs of my child
  • Is their conflict of opinion with their disability i.e.. do they still put them in orphanages and leave them.
  • Will the insurance cover it
  • research - other people's reviews, opinions and knowing it's safe as well as fun.
  • Ringing the company to ask for assistance at the airport and hotels. 
  • Finding out whether your kids can attend their kids clubs or if the childcare isn't suitable for children with needs.
  • Dealing with the disappointment when they can't attend with their new little pool buddies.
  • Packing, every, bit, of, medical equipment, medication, and first aid kit, you, can, ever, think, of! 
  • Packing for all eventualities, just in case.
  • Having a separate bag for medical equipment because there is so fricking much of it.
  • Having to plan ahead, explain where they're going so that there is no break down at the airport.
  • making a new routine that fits in with the holiday.
  • Trying to enjoy the actual holiday and relax... not often possible

Friends - You had loads once...

  • You find out who your real friends are when you have a baby
  • when your baby has needs it is all so telling who and what is going to stick around
  • you don't have the time, energy or childcare to go out to see them as often as before.
  • So you start not getting invited to stuff
  • this hurts and adds to ALL the above stress
  • this is also an exaggerated situation and feeling because of the above stress
  • You feel guilty because you miss out on key points of people's lives
  • you are not told because they're scared not to add to your stress
  • FYI not being told adds to it more
  • You are lonely
  • you are jealous
  • you are hurting
  • you need just a few hours of not being the mum to the child with needs once in a while
  • You need a break

Life - Our lives are full of much more crazy clutter than yours but when we do get our lives back for those few hours once in a blue moon, we'll let you know and hopefully you'll realise that we need you for that bit of normality.


Mental Health - It is said by professionals that those parents of children with any extra needs, whether it be physical, mental or medical, are more likely to have some kind of mental health problem in their parental lifetime due to the added stress and guilt included.

  • Sometimes a cuppa with a mate can be a lifeline for those with mental health issues
  • sometimes all it takes is an offer of help with something as simple as a school pick up or the shopping.
  • Sometimes just a smiling face at the door with a bottle of wine will save a life.

Conclusion = We're fucking exhausted, give us a break!