Hi all

I have decided to take a break from blogging.  This is mainly because I am not sure it has really been acheiving what I set out to do.  I have little confidence as to whether the target audience I had in mind is really being reached, and the discussion I had hoped to spark hasn’t really happened.  Also, I would hate to think that there may be people who feel they need to read my blog out of loyalty to me … most people are far too busy to have to add my blog to their list!!

I have enjoyed the opportunity to write down my thoughts because writing is something I enjoy doing, and I do hope that some of what I have written has been of interest or help to readers “out there”.

So, thanks for reading, thanks for listening, and thanks for your comments and encouragement.

Who knows, I may well change my mind (after all – I am a woman!!), or from time to time write something as the urge arises.

See you.

 

School holidays used to be a time of insanity for me (well, almost).  In the “good old days” when my two special needs children were both primary school aged, my daughter would get a one-week “holiday” at a respite facility and I would have just one child to deal with.  For the other week I would have both. 

Now, to a parent of normal kids this would actually look pretty good on paper.  But you have to remember that there is a huge difference between what you can do with a “normal” kid and a kid with high special needs.  Personally, I found it really hard.  At our kids’ special school during the school term they have a blast.  There is an art specialist, a drama specialist, a music specialist, trips out, swimming…  At home there is just me.  I would struggle to come up with stuff to do with children who could do next to nothing independently, and felt sorry for them being stuck with me in a relatively boring environment.

Then, about six years ago (I am guessing – I have a terrible memory!!), school holiday programmes for children with special needs came along.  What a GREAT idea!!  This meant that my son could attend during school hours for a whole week, and I ended up having the luxury of just one kid to look after per week.  Much easier to get out and about with (my daughter being in a wheelchair).  Coping became achievable and the school holidays became less daunting.

Then funding cuts happened.  Instead of a week, my son was given three days on the programme, then two.  Thankfully, in a similar time-frame, I was able to get him into the same respite facility as my daughter, and this took up the slack from the holiday programme.

Nowadays, with my daughter no longer with us (she died three years ago) I have my 14 year old special needs son and my two year old daughter at home during the holidays.  He is catered for in some way (respite/holiday programme) for about half of this time.  For the week that I do have him at home though, he has pretty high expectations.  I tell him that he has been spoilt.:) .  Like school, at respite and the holiday programme he has exciting and interesting things to do all day.  I struggle to come up with stuff for a week (I am making myself sound pretty pathetic I guess).  By 9am he is hanging around the front door, frustrated, wondering when the BIG DAY is beginning.  When is the taxi going to pick him up?  When will he be going OUT??  Of course he can’t say these things – he is unable to talk – but his body language and frustration says it all.

These school holidays my son had ABSOLUTELY NOTHING to complain about.  The school he attends decided to put on their own holiday programme and we could book our children in for up to four days – so I did!

These school holidays, other than the weekends, my son only has ONE day at home with his mum – and I am looking forward to that day cos I won’t have my daughter and I am planning for it to be a special mother/son sort of a day .

Compared to a lot of other parents of children with special needs I have probably been spoilt.  Many don’t have respite.  Many haven’t been able to access holiday programmes.  Many are unable to choose to hold down jobs because of the difficulty after school and during school holidays.  Many are struggling to cope financially because of this.  There simply aren’t the choices/options/freedom that “normal” parents have.

Thank you to our school for realising this, and coming to the rescue with a holiday programme that parents could actually have some control over – the ability to actually book their child in like normal parents do.

I know funding is always an issue – and this is an issue faced by this holiday programme too.  The school doesn’t have the funds to subsidise such a programme, and is trying hard to get funding for the next school holidays through various agencies, with mixed success.  It’s a shame that those “way up there” in lofty political places are oblivious to the absolute NEEDS of parents of children with special needs, and fail to understand why such a high teacher/student ratio is needed, making running such a programme pretty expensive.  Maybe they need to come along and see a holiday programme in action?  Take a few kids to the toilet?  Help a few kids do a craft activity?  Then maybe the penny with drop?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Two big eyes

watch for a while

then screw up tight

as she starts to smile

 

Two big dimples

now I can see

as  she chortles and giggles

teasing me

 

Two golden candles

on a birthday cake

with the perfect chocolate icing

(mummy didn’t make!!)

 

Our little baby

now a big TWO

Always remember

that we love you.

 

 

 

 

 

Life is a balancing act.  I believe it is really important to strive for balance in the way we live our lives.  It’s too easy for some things to overtake at the expense of others.  The thing that starts to dominate may be good in itself, but not when it suffocates other equally good/important facets of life.

Having said this, we can’t always separate out each part of our life into a neat pile.  Spirituality, for example, is something that I believe should encompass all of life because it should affect the way we live in every way.  But other things are a lot more simple: exercise and diet for one, social life for another.

Now, it’s one thing to believe the whole “balancing” thing, but another to achieve it!  I really struggle to keep the balance right.  I have great intentions, but what seems to happen is I get stuck into one area, and discover that another automatically gets neglected. 

We are all different: we have different amounts of disposable time, different expectations of ourselves, different priorities.  Finding a balance between being disciplined/having good time management/pushing yourself, and not being too harsh on yourself/enjoying the small things in life, can be pretty tricky, especially if (like me) you’ve got a bit of a perfectionist streak in you. 

You find yourself questioning everything: is sitting down reading the paper or writing a blog a waste of time?  Is going to the gym self-indulgent?  Is it OK to be playing with my daughter when the housework hasn’t been done? 

It can be freeing to put pen to paper (or fingers to keyboard) and get your priorities/values down on paper.

Personally, I believe exercise is important.  Not only for you physically, but also emotionally.  It is fantastic for reducing stress levels and giving you extra energy, it burns off calories, strengthens bones and muscles, improves posture, lowers your heart rate…. need I go on???  So, for me it’s a non-negotiable one.  It’s a priority.

HOWEVER… Over the Christmas break, my exercise routine all but vanished, despite my beliefs about the importance of exercise (I never said I was perfect !)  It has been really hard starting again -about five weeks ago I was almost at square one after all the effort I put into my fitness at the end of last year. 

Like many, it helps when my exercise slot gets put into the diary, cemented into place.  I’ve been giving myself heaps of metaphorical pats on the back over the past month as I’ve kept up the routine.  Five weeks ago I was reduced to a 20-minute run/walk combo (walk 2mins, run 2 mins), now this has increased to a solid 30-min jog.  I’m not pretending to be speeding along (just reaching say 4.5km), and it’s not easy and only really half-pie enjoyable.  It’s a challenge though (which I enjoy) and I’m competing strongly against myself.

My aim?  Short-term: to be able to run for 30 minutes easily (enjoyably!!) at speed, including lots of hill work.  Long-term: to comfortably run an 11km fun run in a reasonable time (I know this is very achievable as I have run a few of them in years gone by, and the one I am going for isn’t until October).

The REAL challenge for me will be to keep the other parts of my life happening.  Fitness is important, but it mustn’t take over.  I don’t want to be a “gym junkie” – that’s not part of the plan.  Fitness is just a small part of the big picture of a balanced life.

Hey – if there are any fellow couch potatoes out there, why not invest some time each week into getting fit?  It is important, and it is worth it!

I guess that for many, being able to express what you need, or how you feel, is an expected and normal part of being human.  You almost take for granted this ability to speak your thoughts and your mind to others.

I guess too, that for many parents watching their young child shape their mouths around new sounds and new words, although exciting, it is something to be expected.  It is “normal”, nothing out of the ordinary, nothing to go into absolute raptures about… (although many first-time parents possibly – and understandably do.)

Our little coming-up-two-year-old seems to be grasping new words every week – and for us it is EXCITING, UNBELIEVABLE, AMAZING.  It is so beyond my comprehension that MY child is able to express to me how she feels in words.

She points to her grazed knee: “hurt” she complains.  She wakes up in a sweat: “hot” she explains.  Would she like Weetbix or toast?  “Wee’bix”, she announces.  A visitor comes to the door: “Come in,” she invites.  And it goes on.

It makes me realise afresh how much we would love to hear our son’s voice; love to hear him express his wants, his needs, his pain to us.  Instead we have to guess, as we have done for the past 14 years of his life.  Often, I am sure, we guess wrong.

It doesn’t just make me realise afresh how much WE have missed out on, but also how much HE has missed.  Imagine not being able to share how you feel or what you want with anyone.  Imagine the frustration of having so little choice or control over life.

Recently I attended a session run in the evening at my son’s special school.  They were talking about “Intensive Interaction”, and explaining how it works.  In very simplistic terms, it is a means of attempting communication with children who are profoundly intellectually disabled, and involves trying to communicate with them at their level instead of trying to start at yours.  The comparison was made with how we mimic and talk to babies in their language and at their level.  This, they believed, was how we needed to approach our children with extremely high special needs.  We needed to try to get into their world instead of expecting them to know how to get into ours.

How much time do I spend REALLY TRYING to “listen” to my son’s wants? 

 

  It was exciting at the beach the other week.  Some of the others were down at the water’s edge paddling (including my daughter).  I was sitting with my son up on the soft sand watching.  Then, he took my hand and gave it a tug – this is a new skill for him.  He wanted something.  “Do you want to go into the water too?” I asked him.  He had no way of saying yes or no.  So, assuming this was what he wanted, I helped him up and we walked towards the water.  As we began to get our feet wet, and he could see the little waves coming in, he began to smile, then a huge grin.  Communication.

“Wasn’t your youngest child born on Easter Sunday?”  I was asked the other day.  “Yes”, I replied, surprised she had remembered.  “Wow… that’s spooky!” was her response. 

I know what she means.  It was two years ago our little (and I mean little!!) baby girl was born ten weeks early weighing in at 1460 gms.  New life in our family.  And what’s “spooky”, is that that’s what Easter Sunday is all about.  (For those of you who don’t know the meaning behind Easter Sunday, that’s the day when Jesus rose again from death – and as Christians we celebrate this as being a day of new life.)

She could have been born on any day really, but I think that it is amazing that God chose Easter Sunday for her to come into this world.

Our little girl is a miracle in many ways.  I had come to the point of accepting that we would never have any “normal” children, when God threw me a “curve ball” in the form of what I can only describe as being a very definite “spiritual encounter”, telling us to go ahead and have another baby.  It would be almost another year before we had enough guts to follow through on this – after all, we had two severely disabled children to look after already, we didn’t have the energy for a third child (normal or otherwise).

The verse God gave me on the night of that spiritual encounter (which I admit to taking ages to find in the Bible at the time!) talked of the plans God had for us, plans to give us hope. 

It’s funny, when we named our daughter, coming up with the first name was easy.  But the middle name was mulled over for days after her birth.  Finally we decided on the name “Hope”.  You may well think I’m stupid, but it wasn’t until months after we had named her that I realised how “spooky” it was that we had decided on the middle name of Hope … (I’m afraid that the verse had sort of gone on the back burner with all that happened from my waters breaking at 26 weeks to her birth at 30 weeks).  Hope was exactly what God had promised to give us!!!  And there she was – tiny, but healthy, lying in an incubator.

The other thing that was a miracle about our daughter was the fact that if she had been born when she was meant to, at the end of June, her Grandad (who died in May) wouldn’t have had the chance to see her.  It is very special to our family that we will be able to say to our daughter when she gets older, that her Grandad came and visited her twice when she was a tiny baby in an incubator.  She will always have that special connection with her Grandad.

Our little girl has given the extended family so much hope and joy in the last two years.

Thank you God!!!

I think that as a parent of children with extreme special needs it can be very difficult to know who you can really trust at a medical/health/professional level.

Before the kids came along, you may have been very trusting of doctors and the health system, but now, possibly dozens of hospital stays later, countless specialists visits later, you have become a little wiser, a little more questioning, doubting.  This isn’t necessarily a bad thing – you may have assumed in the early days that the doctor always knows best, or that the health system is always going to be on your side, and now you’ve realised this isn’t always the case and you need to have your wits about you and your eyes wide open. 

When you come across a fantastic paediatrician (as we have) you hold onto them like gold, because not all paediatricians are fantastic.  You begin to recognise that this specialist will go the extra mile – that one won’t.  This one will push for you – that one won’t be bothered.

I’m not trying to discredit the health system or have a whinge about hospital staff – because the majority of my experiences have actually been positive.  But I have had had my fair share of bad ones too, and simply want to make the point that you can tend to become very, very wary. 

Because I trust our paediatrician, when major issues arise involving other doctors/specialists, I always run it past her and (to her credit) she has supplied us with her cell phone number to enable us to do this.  Her support has been invaluable over the years!!

So how does this fit in with the “respite saga?”  Looking around the room at the meeting we had (refer to my earlier blogs), I recognised in the faces of the other parents that same distrust.  How do we know that these people are going to keep their word?  How can we be sure that the respite facilities they build will be up to the standard our children need?  We are so used to having to fight for everything our kids have – from education through to medical attention, from equipment through to respite care, that we have to subconsciously be on guard at all times against any possible threat.

I found it very helpful to run my own fears about the whole respite things past someone I trust “in the know” recently.  I had been meaning to ring her for a chat, then literally bumped into her in a mall the other day. 

Her comments about the plans for the respite facility we use for our son were really encouraging.  She had confidence in the intent and integrity of those proposing the changes.  She shared our concerns about the whole negativity surrounding the “institution” – and felt it would be very difficult to staff a number of smaller respite facilities dotted around Auckland with the quality of registered nurses that would be required – even they struggle to do this sometimes.  She had no qualms about the ultimate sale or lease of the entire land if the money could be used for the greater good of a larger number of people across a broader geographical area.

It was good to hear all of this.  But I still would like to see the plans, the proposals, then see one of these respite facilities up and running before I believe.  (I’m a doubting Thomas!!!)  And I still think it would be a real shame to lose the fantastic, beautiful site at some time in the future (this isn’t in jeopardy at all at present) even tho it would bring in lots of money.  I sort of want to have my cake and eat it too I guess.  Keep this one and build the new ones.

In some ways I don’t know what to think!  What do you think?

We had a couple of outings last weekend that were absolute success stories for both of our kids, so thought it would be good to share with others.

Both outings were to the same destination – Long Bay in Auckland.  It is a beach I have been to many times before, more so as a child, but I haven’t ever taken notice of the playground, so I’m not sure how long (pun unintended!) it has been there in its current state.

Sorry, we didn’t take a camera, so I’ll have to describe the playground to you.  It has a wooden walkway with hand rails on either side that runs thru the middle of it which is accessed at one end by a ramp, and at other parts by steps or ladders.  Slides of all shapes and sizes, tunnels, and climbing frames all come off this central walkway. 

At first we watched as our two-year-old enjoyed herself running along the walkway independently, going down the slide, then back round again for more.  Then I clicked: my son would enjoy this too!  Okay, he is almost 14, but intellectually he isn’t, and I noticed a couple of “normal” teenage girls having fun on the equipment too.  He cautiously made his way up the ramp, holding on to the rails, then (with some help from me) he sat down in front of the slide and I assisted him in slowly shuffling forward, then down.  You could see the look of achievement on his face at the bottom of the slide.  Back round again, more confidently this time, then again.  Obvious enjoyment.

It was fantastic to find something so enjoyable for both kids.  If our eldest daughter had still been alive she would have enjoyed it too.  Her wheelchair could have been pushed up the ramp and she would have been in amongst the other children, which she would have loved.

The beach itself was also great.  Very safe and flat – both kids were excited about having a paddle in the warm water without having to worry about being bowled over.

Finding destinations that work well for J2 isn’t always easy.  He is a slow walker with a very awkward gait, and most playgrounds are too small and a little beyond his climbing ability.  Even knowing to hold on to the sides of the swing is beyond him.  Finding suitable beaches, parks, and walks used to be even more of a challenge with J1 because of the consideration of wheelchair access. 

Long Bay was fantastic!!  That’s why we went twice in one weekend.  If anyone knows of other suitable/successful destinations, please let me know.

I used to think that I was a patient, fair, level-headed, long-suffering type of person.  When others would rant and rave, I almost prided myself on my ability to be objective instead of emotive, to be calm and collected amidst chaos.

I’m not so sure anymore.  Nowadays I seem to often be on the brink of frustration, on the verge of anger.  I think the coping/energy reservoir may be running dry.

I know I get like this when I am tired, exhausted, beyond coping.  It’s teatime, and I’ve had a hectic day.  At 5.30 my two-year old is demanding attention while I throw dinner together.  By 7 she is in bed, but far from sleep.  She cries and grizzles until around 8.  Meanwhile, my son (13) isn’t upset, but quite the opposite, is over-the-top hyped.  He is loud, giggly, dribbling, grabbing anything he can get his hands on and spinning.  Shoes, cups full of water, TV controls, whatever.  I just want to relax, to have some quiet, to rest.  But I can’t. 

By 8.45 we try to put him to bed – actually (I’ll be honest here) my husband puts him to bed – I left the lounge around 8.15 because I knew I was getting myself too worked up, I was exhausted and couldn’t cope with the noise.  Being in bed seems to hype him up even more.  Loud (and I mean loud) excited squeals and shrieks constantly come from his room.  My husband goes into his room to tell him off, to tell him it’s time for sleep, to no avail.  At 9.15 I get him up again (I’ve had time to calm down and have a rest) – give him some more food, then put him back to bed.  By 9.30 finally all is quiet.

Doesn’t sound like much really – in fact, when I read it over, it sounds pretty pathetic.  I know so many people could blog about the dozen or so times they have to get up in the night every night – or of their colicky child who cries almost non-stop.  And sometimes you surprise yourself with what you can cope with (I know I have in the past).  But I don’t seem to have the energy or the patience for it at the moment.  I am so tired that I find myself responding in anger – an emotion that I’m not that used to and am not sure how to deal with.

By the time 9.30 comes, the evening is destroyed.  It is too late to try to enjoy what is left – afterall, ideally you should be in bed by around 10 to cope with the day ahead.  You know that a respite weekend is coming up, which will make the evenings a lot easier.  Perhaps you should plan to do something exciting in the weekend to have something to look forward to?  But you don’t have the energy to be bothered planning anything.  You just want to blob.

I’m not sure why I find this all so tiring at the moment, and why it leads to anger.  Talking about this with someone the other day, I wondered whether it was because it was all more of the same, and perhaps you can only cope for so long.  When I think about it, we have been looking after the equivilent of babies/toddlers for around 15 years now because our two special needs children never intellectually grew beyond this age bracket.  So they have been dependent on us totally for this length of time.  Now we have a third child ( which is fantastic!) but she is also at this dependent, tiring sort of stage.  That’s one theory anyway.

Maybe more recent years have been particularly tiring – the death of our daughter, the death of my father-in-law, the prem birth of my third child… these are all stressful things and maybe they took a lot from our reservoir.  How do you refuel?  How do you rest?

I’m not sure.  Hopefully my next blog will be a lot more positive!!!  I don’t want to sound depressing and negative, but I am keen for this blog to be real and authentic, so thought I needed to include it.

OK – another blog about respite… but let’s face it, in the life of a parent with children with high special needs, respite is pretty vital. 

Anyway, thought I’d better fill in a bit of detail from my previous blog.  As someone said to me recently, “So what are you going to do about it?”

 Let me quickly say, the respite facility isn’t going to suddenly shut its doors, but it is planning some big changes in the future.  Some of the changes are probably good, but others I believe are bad.  I agree with the ideal of being able to offer respite to as many people as possible, and in order to do this money needs to be raised, and in order to raise money the property of the current respite facility could be better utilised.  But I do wonder why they plan to finally do away with respite completely on this particular site.  And I do wonder what sort of respite facitilies they will come up with at other sites throughout the region (I believe nothing near as good as the one we currently have). 

The longterm plan appears to be to “decentralise” and “deinstitutionalise” but this probably wouldn’t personally affect anyone attending the meeting in that most of us have children approaching the age of being too old to be in this particular respite facility anyway (cut off is age 16), and it would take all of this time (a good two years) for the wheels to turn on the whole development/change planned at the respite site.

So, as the person chairing the meeting explained, our role as current parents was to help make the right decisions for those who would follow.  I guess, in a very selfish way, I could say “Phew!!  I don’t need to do anything about it then, cos it probably doesn’t affect me personally.”  That wasn’t the attitude of those attending the meeting.  They wanted the best respite options available both for themselves and for those who would follow.  Admittedly, they did also discuss their personal concerns about what would follow for themselves respite-wise in the 16+ age category (but that’s a whole different can of worms!!!)

Going back to the meeting though, the (very) cynical side of me would say that what we parents think probably doesn’t really come into it at all.  It always looks good on paper to have invited parents to a meeting where our concerns and ideas are listened to and taken into account.  But, in talking to a number of people who have been involved in reference groups and target groups, often this seems to be politically correct time-wasting.  Looks good, sounds great, but aren’t they just going to go ahead with what they have already decided to do regardless?

I expressed a bit of this cynicism at the meeting – and was immediately “rapped over the knuckles” metaphorically – we need to work together, move forward, start somewhere I was told.  In many ways they are right – perhaps I just find it difficult to be trusting and optimistic.  However, in speaking to a few of the other parents after the meeting , I’m not the only one who thinks this way!  Each of them felt certain that the type of accommodation for respite in the future had already been decided, and consulting with us was just paying lip service.

When I mulled over the meeting later that day, a comment that was made in passing by the chair made me think: I wonder whether us parents were perceived as a group of old dinosaurs, unwilling to change, holding/clutching to the past and the way it was done back then, not able to move forward and adopt new ways of doing respite.  I don’t believe this is true at all!!  We have experienced respite for profoundly/severely intellectually/physically children that has worked – and as one parent said, “why fix something that isn’t broken?”

So, what am I going to do?  At the very least I am going to send in my written feedback about the proposal.  I also plan to find out a little more about what I can do, and what others in the disability sector think about the proposed plans.  I need to be a bit more informed.