One of my reasons for starting this blog is to talk about living with a child with additional needs, not only from a family perspective but also from a constant battle with the authorities perspective in order to get any form of recognition or help. Through reading other people's blogs, I have picked up so many useful tips and found brilliant contacts and hope that someone may benefit from our journey as well.
I think it is is easier to start at the beginning with where it all began for us which was over 7 years ago now, rather than jumping in, in the middle. So much has happened over the last 7 year which we have learnt a great deal from, and there is still so much more to come, I am in no doubt about that!
Little Man was born at 31 weeks weighing in at 2lb 9oz after pre-enclampsia and placental abruption. The pre-enclampsia only became apparent 5 days before his birth when I had a routine appointment and they decided the baby was too small and then noticed my blood pressure was through the roof, but I had no symptoms. After a couple of nights in hospital they decided I was borderline PE and I was sent home for daily monitoring, Less than 48 hours later I was haemorrhaging and rushed back in.
His birth was not the relaxed, water birth, no pain relief scenario I had imagined myself capable of. Instead my memories are arriving in an ambulance, not knowing where t'husband was who had been told to follow in the car but they failed to tell him which hospital, luckily he guessed right, hearing mummers of 'we can't find a heartbeat', 'I might of found a very faint one' then Lets go and moving rapidly backwards down a corridor being stripped on route, corridor lights flashing overhead, husband who had just arrived stood looking very lost in the doorway, waving to me and strangely enough a very vivid memory of a little chinese nurse running along at the side of me, wielding a turquoise blue razor telling me once we stopped she was going to shave me. Least of my concerns to tell you the truth my dear!
Anyhow, Little Man was safely air lifted out of the sunroof, whipped away to SCBU and ventilated. Daddy got to see him after a couple of hours, our tiny little man, I got taken up on my bed when he was about 6 hours old and was allowed to stick my hand in the incubator and stroke him. He looked like a little alien, he was bright red, very thin, transparent looking skin, and his head was too big for his body, but he was perfect. It didn't matter he had no bum, just a little hole, or that he was tiny, he was ours.
The next 6 weeks were spent in SCBU and in the grand scheme of things we had a very easy journey. The best Christmas present we got was our first cuddle for 5 minutes on Christmas day when he was nearly 3 days old. He needed oxygen until he was 4 weeks old, fed well, no infections and no scares thank god, other than 3 minor brain bleeds detected at birth which were reabsorbed by 6 months old. 2 weeks after coming home he went floppy, wouldn't feed and ended up on our local children's ward. He was a very poorly baby and as our local hospitals SCBU had been shut down, they didn't have small enough equipment to deal with him. It was here I heard his first cry of pain. They were trying to get lines into him but his veins were too small and their paediatric needles too big, it was heartbreaking to watch. There was a young nurse stood at his head giving him cardiac massage and bagging him to keep him going. The doctor who worked on Little Man that night will forever be my hero, I don't doubt that he saved my little boys life. Early hours of the morning a specialist transfer team arrived from Great Ormond Street and he was ventilated and transferred to their intensive care unit.
I was allowed in the back of the ambulance with him and when we arrived a male nurse called Tom meet us, showed me the parents room and explained what was happening. Once Little Man was settled, i was allowed to see him and then shown across the road to a house where I could stay. This was a Ronald MacDonald house and I think up to this point I hadn't really known what those change boxes by the side of MacDonald's tills were really for.
We were told our 8 week old Little Man (still -1 week gestation) had a nasty virus called RSV, double pneumonia and suspected meningitis but they felt he was too ill to confirm this with a lumbar puncture so were just treating it. It never once crossed our minds he would not be OK. We were told he would probably need to come home on oxygen, that he would have countless re-admissions for chest problems in his early years and possibly lung damage. A week later our Little Man decided he had had enough of their predictions, decided to go it alone without the ventilator, didn't want oxygen and came home to our local hospital a few days later and after 48 hours we were discharged. No oxygen, no apparent problems. He is now 7 and has never had one chest infection since!
At 16 weeks old, he decided to give us another scare and we ended up being blue lighted to Great Ormond Street again for emergency surgery on a strangulated hernia. 5 days later we were back home and we have never looked back with him healthwise.
He walked at a year old, talked earlier than most and met all his milestone at his actual age rather than adjusted. By a year old though he was biting, and nothing we said or did seemed to get through to him that this was not acceptable. The biting soon went to pinching, then kicking, hair pulling, you name it he has had it in his repertoire at some point. At a year old he stopped sleeping - literally, he would sleep until about midnight and then it was game over. I lost count of the number of nights I woke up propped up against his door having fallen asleep there.
By the age of two, I was at my wits end. I dreaded going out as I knew if another child started crying Little Man would be responsible. I started to isolate us to some extent as a result. Little Man never walked anywhere either, he ran and ran and ran and never, ever ran out of steam. Sleeping was still a huge issue, and even sedatives from the consultant had no effect. One friend described our son as the Duracell bunny and it was very true. He climbed anything possible, had no fear and never seemed to learn from his mistakes. Discipline remained impossible with nothing having any effect. In short out little man was a terror and it was heartbreaking. We didnt know what to do, doubted our parenting skills, and wonder constantly where we were going wrong. This is where our first experience with the authorities started!