Tuesday 6 September 2011

Trust your parental instincts

Lucas will probably never fully understand this but I saved his life at 1 month old by listening to a voice in my head telling me to do something that meant another long night in hospital.  To cut a long story short 4 days earlier after 2 visits to the doctors being told a lot of rubbish about him having a heavy cold we decided to go to A+E he hadn't kept a feed down properly in 3 days and was having to work for each breath of air.

Within a few hours we had been taken to the Children's Unit at the Countess of Chester hospital they did a sample of the gunk coming out of his nose and it was confirmed he had bronchiolitis.  After 4 days his oxygen levels began to improve though he still wasn't keeping down his feeds.  The doctor did his rounds and said he is fine now you can go home if you wish.  A very tired Angela delighted at the news instantly started packing but I shocked her and the doctor by saying "sorry but no he hasn't fed properly in a week now"  It turned out it was a decision that without realising it saved his life.

Seeing as I had stayed the previous night Angela stayed over I said goodbye but could tell despite her understanding my concerns she was annoyed with me.  Just 3 hours later I was rushing back to the hospital Connor and Zane were taken by my mother and sister in law, Lucas had been placed in an oxygen tent he was struggling to breathe.  The next morning he continued to deteriorate I called my mum who turned up within minutes along with my sister and brother in law.  They did his blood gases (taking a sample by jabbing the back of his foot) and he was getting worse.  They moved him into the Acute care room I from tiredness said "look mum that poster says looking after your critically ill child he isn't that ill...." The look on mum's face told me I was wrong though it was all a blur.

By this point they were doing his blood gases so regular his screams of pain were beginning to affect me,  my dad had rushed from work to join us saw the state we were in and despite a phobia of needles volunteered to stay whilst they did it again.  It had got to much I felt helpless Angela joined me outside as I smoked 2 cigarettes in less than 5 minutes I was shaking I felt so bad as this was out of my control.  We returned to find them asking to do a chest X-ray I looked at the screen and saw his pulse was over 200 that was when it hit we could lose my son.  The chest X-ray showed he had a collapsed lung he had been trying so hard to breathe the lung had simply deflated.  They made the decision they would place him in a coma reinflate his lung and let the machines do the work for him but this would mean he would need to move to a specialist hospital.

I will always remember seeing him wired up to all those machines and when I saw my parents Angela and me broke down "pull yourselves together" my dad said...roll on 5 minutes he sees him and yep out he came crying!  Then came a kick there was no beds available in the North West there was talk of Newcastle or Bristol!  Then the hospital got a call from Alder Hey yes they did have space for him. So he was placed in an Ambulance and we were taken by taxi to meet him there. 

Once he was settled the consultant in Intensive Care explained again this was about giving him a rest and it could be 2 weeks it could be a month (which would have been mid January)  After a night in the parents room we were moved over to Ronald McDonald House on the hospital grounds this gave us our own bed room and space as well as this each room had it's own cage in huge fridges and freezers and a large kitchen area.  It wasn't home but it was appreciated.  When my parents visited a couple of days later we were given money and ordered to go out for a drink and try and unwind the hospital had our mobile numbers and would call if they needed us.

The next morning I woke up at 5am and decided I wanted to see him so leaving Angela to sleep I went over to the Intensive Care and as I scrubbed up the nurse who was looking after him met me and smiling said "hurry up you will want to see this"  I walked in and there he was in his incubator with no tubes etc... I looked and she explained how through the night he had been tugging things out so they withdrew the drugs keeping him asleep and he had been fine no real reaction or sign of a turn for the worse.  I raced back to get Angela who wasn't impressed by me as I wanted to surprise her.  Once she went into the room the smile said I had done the right thing.  Later that day he was moved to a normal ward and within 2 days we were heading home overjoyed that we could spend Christmas together as a family.

 As a result of this I always make a point of putting change in the Ronald McDonald House boxes if ever I see them, some of the people there had been there for a while and the care and facilities provided make it such a worthwhile cause allowing parents to be within easy reach of their sick child.  But the biggest thing it did teach me is to always trust my parental instinct I was right to refuse the chance of a discharge I am so glad I trusted myself it would have been the easy option to go home on the Thursday .

Lucas aged 2 and me at his first ever MCFC match V Portsmouth

Monday 5 September 2011

ADHD it's a myth isn't it???

It was pretty clear from when I first met my stepson Zane he had issues at 3 years old he was capable of telling lies he could lose his temper over nothing, he could turn a room into a tip within seconds of entering, keep running round until he fell asleep, yet my wife and I were simply told "he's naughty deal with it" At nursery he was pretty much left to do his own thing "because he's naughty" they would tell us at home time. That same story kept repeating itself through reception and year's one and two.

Now he should have moved up at that point but the deputy head saw fit to keep him in her year one/two class (we later found out this is illegal!). A new headmaster took over and Zane was moved up to the correct class things seemed to improve then he really slumped swearing in class, bullying other children. storming out of the classroom etc. Having read about it online we were sure he was ADHD (ATTENTION DEFICENT HYPERACTIVITY DISORDER) he matched the symptoms so well we asked to be referred but were told no he didn't have it. The local family centre had been brought in by the school we were sent on every parenting course you could imagine all action plans and reward schemes failed despite our very best efforts.

Trips out were a nightmare he would try his hardest to wreck the day even before we had gone out the front door by attacking his younger brothers. Another issue that had appeared was the also the strangest to cope with, the worst thing you could do was praise him words like well done would send him into an almighty tantrum. Yet again at review meetings we were told he was just naughty and we would have to face up to this in our roles as parents.

By Year 4 (aged 8) He had been moved into a special class run by the schools SENCO (SPECIAL EDUCATION NEEDS COORDINATOR) She quickly realised Zane was really struggling with basic English and through her own tests realised he was dyslexic. She got the proper tests in place and the results confirmed her suspicions he was indeed dyslexic. It was a start and also meant he got some one to one help in class and his work slowly began to improve however his behaviour certainly didn't. Another review meeting and everyone from the school to the doctor seemed convinced that the dyslexia was the sole issue and yes he was a "naughty child"

After our last parenting course trained technique had failed we went back to our GP's and begged to be referred to the specialists at the hospital, the doctor realising our genuine frustration did so. When we finally saw the Consultant we were both gob smacked when again we were told "no he doesn't have it face facts he is just a naughty child" The Doctor looked up and realised in the 2 minutes we had been talking since Zane left our side he had emptied an entire cupboard of toys the doctor had in the room. The doctor some what surprised at the speed this had been done said he would send the Conners Test to both us and the school.  The Conners test is a tick sheet where you rank behaviour in many different areas on a scale of 0-3 to get a diagnosis there needs to be a clear agreement between the parents one and the schools one.

Fast forward to September of year 5 (aged 9) we went back to get the results and yes he did have ADHD finally we weren't mad despite our best efforts trying to be firm yet fair there was indeed more to it than simply him being naughty. Perhaps a little arrogantly I took great pleasure in ringing the school and informing the headmaster he was wrong and that Zane was now on Ritalin. This of course led to issues for the SENCO she had to reapply for a new statement to cover the fact that he was ADHD as well as dyslexia. If anything this led to a new problem the school became far too keen to send him home if he was naughty, things that other children would have lost break time for resulted in my wife or I being called to bring him home.

The flip side was in year 6 (aged 11) when doing his SATS Zane actually achieved the correct level for his age for Science proving that yes ADHD is an issue but a child can still achieve good things in their education we were very proud of him for that.

Aged 14 now he goes to a special needs high school and is doing well, yes there is the odd flair up we still see the red mist descend over nothing but life is much more positive for him. The one thing is he does need a few days notice to cope with the idea of change (so no surprise days out).

Recent research has shown there to be a genetic link with some cases of ADHD, now with there being at least 8 (that we know of) cases in Angela's family I think it's fair to say yes there is.  So when Lucas our youngest son started showing signs we were a little concerned but thought it might just be us imagining things.  Then it really began to go wrong when he started nursery he would attack teachers after blowing his top over nothing.  In the worst incident he bit a teacher so hard he almost tore a chunk out of her arm.

He over reacts to situations and goes on what me and Angela call "mega crys" these can last for over an hour and be set off by simply saying no, by the time he finishes he usually explains he was crying over something totally different to what originally started him.  He does so much without thinking that he needs to be kept under close watch (even washing his hands alone is a no no he has flooded the bath room in the past)  The daft thing is Lucas goes from one extreme to the other in such a short time, it is like there are 2 totally different little boys.

Voicing our concerns to the school we were a little surprised by their reaction. Yes they wanted us to go on yet another parenting course the sort that recommend reward charts the very sort that a child with ADHD lose interest in very quickly.  Questions were asked of Angela and me.  We were once again facing a fight to prove the blame didn't lie with us there was something more after a year and a half of issues a simple conversation between Angela and Zane's consultant made a light appear.  She asked for us to get Lucas referred.  Listening to us explain the senior consultant reading the notes made from the meeting we had attended over Lucas and seeing Lucas just haring round just simply said "you know don't you"  Finally someone had listened true it was quicker than in Zane's case but still the questions asked of Angela and me had put a strain on us.  The Conners test has been issued again we've done ours the school will complete theirs and we go back in October for the results.  (UPDATE Lucas has been confirmed as ADHD)

The sad thing is ADHD is clouded by a lot of myths it's a "poor kids illness" or "it's just bad parenting" or simply and wrongly "it doesn't exist" even the one that really annoys me "to easy to get diagnosed"  It is very real it effects people from all walks of life and as I've explained it most certainly isn't easy to get diagnosed.  That said it is also not a cop out excuse for letting a child run wild that is bad parenting.