RSV
Michael turned two and winter caught hold of him again, we had our first confirmed case of RSV (Respiratory Syncytial Virus) which put Michael back in hospital over Christmas again this year.
He spent almost 4 weeks in hospital, back in oxygen, ad pretty sick, he was grey for a long time, and just looked so poorly. He came home on Christmas Day, in Oxygen.
The chest infections, pneumonia etc. unfortunately didn't end there, all through the winter we were spending a few days here and there, back in hospital and back in oxygen.
In the February, we started going to a mother and toddler group for children with special needs, Michael had literally just started walking independently. He was 27 months old.
Michael really enjoyed going to opportunity group, it took him a while to get used to the routine......but it was becoming ever more apparent to us that Michael was not developing in the way that we had expected. He hadn't "caught up" When he started at the Opps class a developmental profile was done. He was non-verbal and developmentally delayed, developmentally he was roughly at the 12 month level.
It was becoming more and more apparent that he was not communicating, he had roughly 6 words that he used repetitively,
He had no concentration, no awareness of danger, sensory issues around his hands and feet, and because of the lack of sensory feeling in his hands and feet he used his mouth, he burnt himself, in hot water and on a radiator, and showed no sign of pain.
He still destroyed things in the process of working out what they tasted/felt like.
He had no idea of where his head, shoulders, knees and toes were, nor could he point to others.
He had no real interest in communicating with people, he tolerated them. He had little interest in the children around him.
He need constant reminders to concentrate on what he was doing..he needed someone with him at all times in order to keep him safe.
We used to say that Michael had grown into a stage and never grown out of it, all babies put things in their mouths it's how they find out about the world around them........Michael just didn't grow out of it!!
He did begin to develop an interest in DVD's, not just for chewing but to actually sit and watch, and I must admit I took the opportunity to be able to put a DVD on knowing that he would watch whilst I did some housework!
As he got older I started to try to do more with him, play dough, painting baking etc...it didn't take me long to find out that he just didn't have the concentration for it, 30 seconds of painting would take me 30 minutes to clean up...he ate wax crayons, felt tip pens and pencil crayons, he ate play dough, and he ate paint, he chewed paper, he tore books and he chewed jigsaw puzzles. I was at my wits end...I just did not know what to do or how to keep him occupied and safe, Michael would be moving onto the next thing before you had a toy out of the box!
Child Development Centre
We had an appointment come through to see the Community Paediatrician. I don't want to go into too much detail but he and I never really hit it off.
I came away having been told Michael had ADHD and I should think about Ritalin for him. Michael was 2 1/2, and developmentally delayed and non-verbal...Oh no I don't think so! My biggest issue was filling him full of drugs given his developmental delay, what I wanted was some idea on how to cope with the behaviours -- how to keep Michael safe.
After lots of "discussion" and me losing my temper with the Dr he agreed to refer Michael to one of the top Children's Hospital's in the country - to the Neuro Development team for an assessment.
He also agreed to refer Michael to a Neurologist for an assessment. But during one of our discussions about the difficulties that we were experiencing with Michael he did kindly point out that "You can't have a baby at 24 weeks and expect normal - read the research"
Can I say my mouth was on the floor..........I am not sure that I can put my feelings around that comment on here...........devastation, anger, frustration, betrayal amongst others.
When I questioned why we were not told this his reply did nothing to quell the anger........"we don't tell parents, we only tell them about the risk of CP"
He was politely informed that maybe, just maybe, they needed to tell parents just what the chances are of having a child develop long term issues as a result of having been born early.
Opps Class & others!
We attended Opportunity Group twice a week, through there a Speech and Language Therapist (SLT) and an Educational Specialist became involved. After an initially shaky start Michael soon started to enjoy Opps Class, and it was nice for me to have the opportunity to meet with other parents, some with premature babies who's disabilities were more severe than Michael's, and also mothers of full-term children with disabilities.
The SLT, came to look at helping us work on Michael's feeding problems and also developing his communication skills. She suggested that we start introducing Michael to melt-in the mouth foods, such as quavers, wotsits etc. He took to these with very little problem.
As Michael would be starting playgroup at 3, the Educational Specialist looked into getting Michael one-to-one support, for when he started playgroup.
Behaviour issues
I've already touched on Michael's behaviour issues, I'm not sure I can stress how difficult his behaviour was becoming to deal with, he was fine with it, he didn't see it as a problem. I, on the other hand, was finding it increasingly difficult to cope with. I have spent more hours than I care to think about in tears, wondering where I was going wrong, why Michael wouldn't communicate with us? what was/is this apparent death wish he has? Why do we have to live in a "prison" My love for him was tested to extremes.
He needed constant supervision, and I look back now and wonder how we ever got away without more trips to the A&E department to have broken bones fixed etc...........
Michael was a 24 hour a day job all by himself, as he did not communicate, he got the things he wanted himself, and this usually involved climbing, it didn't seem to matter how high things were placed out of his reach he still went for them.
When trying to help him have the things he wanted ie a DVD, we would have screaming sessions that resulted in us going through several DVD's and ending up with the first one he'd chosen.
He was beginning to show real obsessions with his DVD's we would have to have the same one on for weeks at a time, over and over again.
We also at one point, ended up with Cartoons/DVD's on every television in the house. He wasn't watching them, but if you tried to change the channel he knew and the end result would be a screaming session, until it was returned.
He was impossible to interact with in many ways, he would tear from activity to activity without stopping for breath, if he was sat quietly doing something we soon learnt it was best to leave him, because if you tried to join him he would leave.
We have no covers on many of our video's Michael has eaten, torn and generally destroyed them, jigsaws were not for putting together they were for eating, they come apart in so many ways! Drawers are not for storing things they are for emptying, bookcases the same. My house looked like a hurricane had torn through it. It got to the point where I didn't see the point in picking up anymore, no sooner was it picked up then it was on the floor again.
After a visit spent in tears with the community nurses they suggested a referral to our local SSD for some help and support in dealing with his behaviour issues......and seeing if they could provide some support in the house to help me.
I have to say that I found the whole idea of a referral to social services difficult to deal with, it was almost like admitting I'd failed, not only in having given birth so early, but then to raising him too. I was concerned that they would come in and not want to help, but to start questioning the way I was raising him. It is amazing the way your mind works when your on a downer!
In the end I agreed to a referral to Social Services for the sake of my sanity, any help was better than this.
Michael being so thin he can get through and out of places that would be impossible for most children, so all windows had to be locked. The gate at the side of our house is a metal gate, with Michael sized gaps.
Grandma had been over for a visit, and after she left Martin went upstairs to get Michael a change of trousers, his had got wet sitting on a garden toy. By the time Martin got downstairs with clean trousers............Michael was gone.
Michael was found wandering down the main road in a nappy and vest, by a passing motorist, put into the back of her car and taken home with her.
Martin in the meantime was ageing about 40 years, turning the house and the garden upside down, the side gate was still locked, but it soon dawned that maybe Michael had just walked between the railings. Half the street were out looking for Michael in their gardens. The police were called and Martin was advised that a woman three streets down had picked up a child on the main road. He ran round to her house, and got there just as the Police were turning up to collect Michael. When Martin walked into the living room Michael was sitting on the floor playing, he looked up at Martin with no recognition at all, other than an expression on his face which Martin interpreted as "What you doing here??"
Cardiologist
Our Cardiologist is also a neonatologist, he has worked with preterm infants for a number of years, and extremely experienced Dr within whom I have the utmost trust and respect.
I took Michael to one of his Cardiology clinics, Michael had his Echo done, and all was well, he arranged to see Michael in a years time.
Whilst we were discussing behaviour, development ad feeding issues he suggested removing Michael's bolus feeds during the day, in order to normalise his eating, the hope being that Michael would be hungry enough to eat normally.
He also asked if anyone had told us what to expect, if anyone had sat down with us and told us how life would turn out. I had to be honest and say that they hadn't. The Dr then apologised and said that someone should have told us what we were heading for, and had Michael been born there then they would have done that, given us the option of withdrawing life support, given how sick Michael had been.
How do I feel - devastated, angry, lied to......why?? because so many times we asked what effects being born so early, having the IVH's etc would have, what impact all this would have on Michael.
We spent time discussing this with the Dr's, I said that I needed to know, and that if he was likely to suffer, then I wanted life support withdrawing. My concerns were swept under the carpet, I didn't realise it at the time, but hindsight is a wonderful thing
We did not get answers, answers that I feel they had, or at least had a good idea about how things would turn out, and I feel that information was withheld from me.
As much as I love my son, one of the main difficulties has always been the uncertainty, the not knowing, the wait and see game we've played. I deal with things far better if I know what I'm dealing with. If I have all the cards laid out in front of me then it is easier to handle. I cannot cope with the surprise round every corner.
Shortly after this our Health Visitor suggested a referral to the Child & Adolescent Mental Health Team for some help dealing with Michael's more challenging behaviours. The hope was that they would be able to offer some ideas on how to deal with the behaviour. I did speak to a psychologist from CAMH, and discussed the difficulties that we were having behaviour wise with Michael and advised him of Michael's background history and asked for some help forming strategies to deal with them.
I was told that this could be something that they could do, but with all the input we had ie an upcoming appointment with the neurologist etc they did not feel that there was much that they could do in terms of assessing Michael.
Winter of course was heading our way again, yet more time spent running between home and the hospital for yet another chest infection, pneumonia. Does it ever end?????
