Sunday, 6 May 2012

I'm a big boy now.

It is official, Rowan is now considered a 'pre-school' age child.  I have never really considered the fact that Rowan was a toddler, between the age of I suppose 18 months and 3 they are considered a toddler.  No one ever referred to Rowan as a toddler, maybe that's because he never 'toddled' or maybe that's because there were other things we needed to focus on.  So it hit me hard when, on the 26th April 2012, I realised Rowan was no longer a baby, he is now considered a 'preschool' child.  That is scary.  Along with teaching Rowan to tell everyone he was 3 when asked how old he was, we also started to teach him that he was a big boy.  He may be small in size, but he is big in so many other ways!!

3 years ago, Rowan entered this world, and I suppose we should have known from day one that he was never going to be a stereotypical child.  After all, Daddy had to deliver him on our bathroom floor, no paramedics, no midwife, just me, Lee, and a man on the end of the phone.  We were expecting a girl, we had several scans which all stated that we were having a girl.  We had a girl's name, Keeva Taryn.  He very definitely isn't a girl and he did not want to be born in hospital.  Unfortunately, because I have a care plan because of my mental health, and because we had a social worker, and because Rowan was cold, we had to go the hospital still.  I didn't want to go to hospital I would have been more than happy to curl up in my bed with my new baby.  We had no boys names.  But we chose the name Rowan, Lee picked out a few names a few weeks before, as we were trying to chose a name for the 'baby' we started looking at all the names.  Rowan means 'little red one'.  Rowan, despite having a very low temperature when he was born, was extremely red.  Even the midwife commented on how red he was, lobster red.  So this name seemed to fit him perfectly.

                                                      Waiting to go home from hospital

To continue from my last post, I just want to point out a few ways that I was discriminated against, because of my mental health.  I came off all my meds when I was 34 weeks pregnant so that the 'baby' wasn't born addicted to my medications and go through withdrawal.  Anyone who knows me, knows that 'med free' and me, don't mix too well, combine that with pregnancy hormones and it's a recipe for disaster.  Despite all this I was determined that I was going to make it through, for my baby's sake.  What I didn't mention was that I spent 18 hours on our maternity ward, while I was in start stop labour, 5cm dilated, waters already broken 24 hours before.  I have VERY quick labours.  I was getting agitated on the ward.  I have to be told EXACTLY what is going to happen and when, or I start losing it.  Well I was just left to it, and I started to get irate.  This was written in my care plan, that this happens (it happens even now, and I'm on meds but that's another story).  About 6 hours in I am ready to kill someone, so Lee approaches the midwife, and explains the situation.  No one had even opened my notes, or looked at my care plan.  And people wonder why I have never written a birth plan!!  Anyway, once it was pointed out, the midwife started to talk to me like I was an idiot.  This is my biggest problem, I have a mental health disorder, that does not mean I am stupid, or an idiot, or deaf!  Eventually they moved me to a ward, and told me to 'stay there'.  A man came in, I don't know who he was, or what his name was, but he came in and removed my 'glass' and gave me a plastic cup.  'For your own safety' was what he said.  I was in shock to say the least.  I self harm.  Now, I'm not going to get into it, but I can do as much damage with a plastic cup, as I can with a glass cup, if that is what I want to do!!

So they let me home, 5cm dilated, contractions every 7-8 minutes, told me I had ages to go, and sent me home, in a taxi, on my own.  I lost my temper, and told them there was no way I'd be back until after I had had the baby.  I was just angry I didn't mean it, but that was exactly how it happened.  Rowan was born at 23:40 on 26th April 2009.  It was a Sunday, by the time we got to the hospital it was the early hours of Monday morning and by the time I was on the ward with Rowan it was 6am.  They made Lee go home, as he couldn't be there until 8am.....I suppose rules are rules, but really it was a little ridiculous. 

At no point in my care plan that was forwarded to the ward does it state that I am at risk, or my 'baby' was at risk.  It simply states that they need to inform the social worker and the community mental health team upon delivery of the baby.  I had two prescriptions already written to start back on medication.  One for if I breast fed, and one for if I didn't.  So at 8am I started hassling to go home.  I am not good in a hospital, I am not one for 'rest' I need to get up and get back to normal, I just had a baby, I'm not ill.  But no, the midwives kept going on and on and on about my 'mental health' and they needed to make sure we were both going to be safe, and I couldn't go home unless the social worker and my mental health worker said it was OK and it was safe etc etc.  It was a joke!  I was crying down the phone to anyone who would listen.  The longer I stay in hospital, the more ill I get mentally so I just needed to go home.  In the end the only way that i managed to get to go home, was if I had a welcoming party of professionals when I walked through my door.  Is there anything worse than going home, to now 4 children, one of whom had a broken leg, a health visitor, a mental health worker, some friends, and a social worker.  That was the ONLY way they would let me go home, even talking to them on the phone wasn't good enough, they wanted me to have risk assessments.  And why? Because I have a label.  I had never had a history of mental health problems immediately following childbirth, I was exhausted (which impacts on mental health) and I just wanted to go home and go to sleep with my children.  Anyway I jumped through all of their hoops and I was finally left alone.

I supposed from then I should have realised things were never going to go to plan!!

Rowan's first birthday was spent in our local hospital.  He had spent most of the first year of his life in hospital, and he considered it home.  He knew no different.  So while we devastated that we couldn't even have that at home, in hindsight it was very fitting to spend such a huge milestone with those who helped him get that far.  We did have a little 'party in the park' for him, but he was so poorly and so tiny, he didn't appreciate it.

                                     First birthday in hospital, all the presents from the ward

His second birthday, we FINALLY had him at home (just, he came home from 8 months at GOSH 2 weeks before his second birthday).  I got very upset as we tried to organise a party for him (considering 6 months before we were told he wouldn't make it to see his birthday, it was a HUGE deal for us) but no one was free, or was going to turn up so we cancelled it, and just spent time with him.  He was still fragile and poorly but he was spoilt rotten!
                                                 Rowan with his present from his friends
So, now his third birthday.  We did not even attempt a party.  I wouldn't know who to invite to be honest.  So we just decided we would celebrate it on our own.  The big 3 kids were at the childminders all day.  Rowan went to his childminder in the morning, he took a cake and celebrated at the group she takes him to.  He came home and had his presents, an art table, DVDs, a trampoline, Lego, puzzles, etc.  He played on his own for a bit and then had a sleep.  We something special for dinner, and he went to bed.  Nothing special, but it was nice.  Next year will be the big celebration, he will be 4, he will have been to nursery for several months, he will have FRIENDS to invite!!!

                                                       Rowan on his 3rd birthday
So, now that Rowan is a preschool age child, I have started to realise all the things he can't do, that an 'average' 3 year old would now be doing.  OK, so he is still only take a few steps here and there, and this is causing him huge pain, resulting in fatigue as well.  Two nights so far this week Rowan has been in bed by 430pm, moaning in pain, dosed up with pain meds, and a DVD.  For a little while now I have noticed how many people view Rowan as a baby because of his size, and how many people treat him like a baby still.  He used to shout at people, now he is accepting it.  And that is not good.  Children at nursery when I take Ayden up, call Rowan a baby.  Ayden is very good and stands up to them and says he's not a baby, but this is how children see him, and will automatically ignore or exclude him because he's a 'baby'.  He is far from a baby!!  When Ayden states to his friends that Rowan isnt' a baby, the first thing they all say is 'he's in a baby buggy'.  And how many of us have said it, 'you're not a baby, you don't need to be in a buggy, you can walk like a big boy/girl'.  I even do it now to Ayden!  So of course other children see Rowan as a baby.  He can't walk, he is in nappies, he has a buggy, and he doesn't really talk outside the home.  I am not prepared to accept that.  So, I need to change as many  of those things as I can, in order for Rowan to feel he is a 'big boy'.  So, starting with the nappies, Rowan has a potty (two in fact).  Now, pants, underpants......for a small child.....roughly aged 6-9 months (he has no bum).....impossible.  The smallest we have found are 12-18 months, they are obviously mickey mouse (seen as they had those) and my job is to make them smaller to fit him.  Once i have done that, we are going to attempt potty training.  Number two, talking outside the home, well we are already working on that, and it's a 'no pressure' technique, so there isn't much I can change about that.  Walking, well I can't change that for him either, unfortunately.  Now the buggy.....can I change that....YES I CAN.

A little while ago an Occupation Therapist came out to look at Rowan, and she stated that she did not like the way Rowan sat in the buggy.  He sits on the bottom of his spine, and the straps sit on his Hickman line and his feeding tubes, and the only way to get him to sit properly in the buggy was to literally pull the harness so tight he couldn't move.  Well then all his lines dug into him, and caused pressure sores.  So that wasn't an option.  But there was never anything that anyone could do.  This OT however, told me that he needed a referral to wheelchair services for a pushchair that he sat properly in.  This didn't happen, because then we swapped OTs, and the new OT said that everything was fine, he sits like every other child in a pushchair, and although it's not ideal 'it will do'.  Well since when as 'it will do' been good enough for anyones child?!  I was prepared to accept it 'will do' for now, and hope that he wouldn't be in the buggy for much longer anyway.  However......Rowan, a year later, is only taking a few steps here and there.  He uses his Kaye walker, which he loves!  But the more he walks, the more pain he is in, and the tireder (I'm sure that's not a word) he becomes.  We never factored in pain, or the extreme fatigue, into his life.  Who would ever predict, that something as simple as a 3 year old walking, would cause such huge problems.  He is on gabapentin, paracetamol and nurofen most days now, he is in bed extremely early, he cries in pain, and some nights no amount of pain relief or massaging helps.  As a parent, seeing your child in pain is one of the worst things you can see, knowing there is nothing more you can do for them.  I need to fix this.

                                                         Rowan and his big attitude
So, in order for Rowan to be independent, he needs to be able to move about to explore things, and investigate, and he needs to be able to do that on his own.  He is going to nursery in September, when I know his pain and fatigue will peak, as he will need to be more active.  That is the case with EVERY child, not just our little superhero.  When he's in pain, he's tired, and moody, and doesn't want to know anyone, and nothing is good enough for him.  How can I get him independent and as pain free as possible.  I wasn't sure, so I started asking around.  One of our professionals said to us to bear in mind, that with his current ridiculous amount of 4500 calories per day, as his activity increases, as does his calorie requirement and we're maxed out on calories and fluid.  It was also said that we could possibly find a way around this problem, but we needed to be aware.  Then Physio said we need to limit his activity to prevent him causing himself too much damage.  Suddenly that trip to soft play, and then toddler group afterwards, which should be such fun for a 3 year old, turns into torture, and it makes my heart hurt.  Another one of our professionals, mentioned a self propelling wheelchair.  He could move himself, burning less calories than walking, less pain in his legs, but he can be pushed when he needs to be, he would be independent from us, he would 'look' like a big boy, and in turn this would make him 'feel' like a big boy.

                         Asleep, in bed, at 430pm, after calpol, nurofen, gabapentin and massaging.

So.....who makes wheelchairs small enough for someone who is effectively the size of a 12 month old.  12 month olds are still in buggies, or special needs buggies.  And the hunt began.  I started asked people who I knew had small children in wheelchairs.  5-8 year olds, and went from there.  I emailed manufacturers and NO ONE returned my emails.  I think mainly because they are all foreign (mainly German!!).  My searches brought me to 3 wheelchairs.  Ottobock Bravo Racer, Meyra Brix or Mex-x, or a Youngster 3.  I still wasn't sure these went small enough.  Then, someone I know, told me to go to Naidex, and ask.  I had nothing to lose.  For those of you who don't know, Naidex is a disability roadshow.  Like the 'mother and baby' ones, where you look at buggies and swings, and bottles and all the new gadgets, but for disabled people.  It was at the Birmingham NEC.  I registered and booked our free tickets, Lee, Rowan and I took the 45 minute train ride to Naidex, and it was the best day of our lives so far.

Ottobock was the manufacturer I was after.  I don't know why them specifically, but there was something that drew me to them.  We wandered around for a while, we watched a fascinating talk on sensory equipment from everyday shops, using everyday items mixed with a few 'more specialist' items.  We learnt about portable sensory environments using projector umbrellas, and we will definitely put these hints and tips to use!  Even if it doesn't work for Rowan, there are plenty of 'meltdown' situations in our house that would benefit from a 'chill out' and I'm not just referring to the children!!  So we hunted for the Ottobock stand. As we were leaving we found a map of where everyone was, but hey it's much more fun to hunt!

You know you see adverts, where you see someone, or something and a light comes from heaven and lights it up!?  That happened to me.  Ok we can probably blame psuedo-psychosis, but anyway, the point was, amongst all the amazing wheelchairs they had out on display, there was a tiny wheelchair, orange frame, with a clown face on it.  I was drawn to it.  I was carrying Rowan, as he has decided he doesn't like to be in the buggy, especially in loud/busy places, which Naidex was.  I walked over to the wheelchair, I had never seen something so tiny.  I bent down with Rowan, and he stood up, leaning on me, just looking, and said 'wheelchair'.  We asked him if he wanted to sit in it, and he said yes.  We put him in it, and he was quite happy, until the staff realised and all came descending on us to offer advise and ask questions, and suddenly he wasn't so happy.  It had nothing to do with the wheelchair, it was the pressure of people making a fuss.  We talked to the guys from Ottobock for a while, explained our situation, and they agreed with us.  Now, you could say that they would agree, because they are trying to sell a product, however, without any prompting from us, they listed all the advantages for Rowan having a wheelchair.  Then came the tricky part.  The lady asked us if we would be looking at charity funding, or if we would be self funding.......

                                                  Rowan in the Bravo Racer, by Ottobock

I had investigated charities, and enquired.  They all wanted a supporting letter from OT or Physio.  In theory that should be fine, he isn't walking, he is 3, he doesn't sit properly in his pushchair, but neither physio nor OT would write us that letter.  So we had decided that if he needed it, we would save up, fund raise, anything to get our superhero what he needed and deserved.  So we explained this to the lady and she asked us to come back, there was a man she wanted us to see, but he'd had a blow out on the motorway.  We did just that, unforunately he wasn't going to make it.  We put Rowan back in the wheelchair so we could look again.  So this lady (I so wish I had asked her name, but I think she was called Jo) asked us if he would be happy to stay in the wheelchair and be pushed to the other end.  Confused, we said yes, and pushed him the length of convention, to a stand with MIDSHIRES written on it.

This is where the moment happened.  We met a man called James.  We were talking to James about our situation, and we were talking about the benefits of children like Rowan being in a wheelchair.  While we were talking, out the corner of my eye I could see Rowan moving one wheel back and forth with one hand.  James said without a doubt Rowan needed the wheelchair.  He is the supplier that covers our area.  He also said he is 100% sure we could get funding for it from a charity.  We explained that we could not get a letter from OT or Physio.  James said he hears this all the time, and there is a reason OT and Physio will not write you a supporting letter.  If they put on a piece of paper that your child needs a piece of equipment, they are obligated to provide it.  Therefore no one will recommend Rowan needs a wheelchair, because then they will need to provide him with it.  The way to get around that, is that we can get a supporting letter from any member of Rowan's medical team.  Result!  James measured Rowan up, and is doing us a quote, they will help us with the charity forms, and applications, there may be some publicity required from us, he took a picture of Rowan in the wheelchair.  The lady from Ottobock was an OT and she said she would write us a letter in a heartbeat, but because she works for Ottobock, she can't.  The wheelchair he was in, was brought over specifically from Germany, they do not stock them that small in the UK.  Like I said, James has said that by July, we should have someone to fund the Bravo Racer for Rowan.

As if that wasn't exciting enough, and amazing, that everyone agreed this is what Rowan needed and deserved, that it would improve his quality of life, so he can join in activities even when his legs are sore, and muscles give up on him, give him more opportunities to rest those legs, while keeping up with his peers, giving him independence, that he can run off in tesco, or more roll off in tesco, like every toddler does, knowing that he won't end up in so much pain, or flat on his face, or potentially breaking a bone or causing lasting damage.  Or amazing enough that so many people went out of their way to help us help Rowan, Rowan decided to amaze us once again.

James turned Rowan, in the wheelchair, around.  He asked me to go and stand the opposite end of their stand.  He then told Rowan to 'go get Mummy' and Rowan just looked at him.  It would appear I wasn't the only one noticing Rowan playing with the brakes and the wheels.  'Go give Mummy a kiss' he placed both hands on the wheels, had that look of determination in his face, and pushed both wheels, he moved.  The realisation on his face of what he had done, and he did it over and over he reached me and got that kiss.  I was in tears, Lee was in tears.  How embarrassing.  Rowan had a HUGE smile on his face.  'I did it'.  He then worked out, by holding one wheel, and moving the other, he turned around, so he turned himself around, manoevered himself around another lady in a wheelchair, and moved himself to give Daddy a kiss.

It's like watching your child take their first steps.  Only better.  I was worried, putting Rowan in a wheelchair would be too much, that all I would then see was a wheelchair, a disabled child.  But that is not what I saw, I saw a big boy, moving himself, it was enabling him to experience that which every other 3 year old experiences, pain free, not burning hundreds of calories, not risking breaking one of his very fragile bones.  Rowan isn't and won't be confined to a wheelchair.  It is merely a substitute for the buggy, or for days when his pain is just too much.  It is not a step away from progression, it's a side step.  Rowan takes lots of side steps, as well as steps forwards and backwards.

                                                  What do you see, disabled, or enabled?
Rowan will be seen terrorising customers in tesco very soon!  Rowan.  Officially a big boy.


  1. How exciting :)
    Equipment = enabling not disabling in my mind (and my life)!

  2. Your story is amazing and extremely touching. I truly hope everything will turn out great for your little one. Just hang in there and God bless you.