So following on from the nanny........
It was great, jade was amazing, the kids knew her and she knew them so it was easier for me to relax back into work. They were hard work for her but she was a natural! It was getting on for summer now and summer holidays were nearly upon us again! Lolly would be due to start in reception after the holidays and S would go into year 2. I was excited about this because I was told school are much better at picking up on things, like autism etcand they were quick
with referrals. I was just Hoping and praying they noticed and we had some support from them. Although nursery picked up on a lot of Lola's traits and thought something wasn't quite right, again they didn't suspect autism because of social side. It was so hard. Some family members by now were starting to pick up on it, and listen to me. I think I Had banged on for so long that they pretty much had no choice but to go along with it! So we are at about 3years 9 months now, and Lolly was so demanding, she was so controlling, every thing we did revolved around her, she had an obsession with shoes was getting worse, every time someone came round she wouldnt wait for them to take them off she would just ask for their shoes and wear them around changing into everyone's. This was particularly hard for other children especially when they didn't want anyone else wearing their shoes. I didn't ever see it as a problem I would let her wear any. It wasn't causing any harm. But other children didn't want their shoes being worn, which was understandable and It caused problems, because she was so obsessed she would start screaming, and breakdown. I had stopped going shopping with her I couldn't take her anywhere, I mean anywhere, I ordered everything online, and to this day amazon prime is my best friend! I used to love Christmas shopping and buying those little personal trinkets, but I just couldn't do it, and we couldn't do it all as a family, god we tried, (I'll come to our MK shopping trip in a while, but it was no use, she was having between 10-15 meltdowns per day, and they were meltdowns. They weren't tantrums. They were full blown meltdowns. She didn't care who or what she hurt, she had no control over herself, and didn't care who was watching. Things were really tough, she was more and more violent, especially with Moo I had to keep them completely separate. I couldn't just lay Her down for a nap, I had to keep constant watch over them to make sure she wasn't hurting her. She would just pick her up and drop her on the floor, or stamp on her, pinch her or slap her. It would come out of the blue too, so we could just be sat there nicely and bam she would strike! I was researching a lot. Always reading, about autism. I was obsessed! Every evening I would settle down to read up about it, find information on girls and why they presented differently, I would write it all down. I never gave in! Not once I couldn't afford to! We were at breaking point!! Everyone in the family was suffering, I had such little time for anyone it was unreal. Who will help us? There wasn't anyone willing to listen, we had been discharged. It was the end of the road for that wasn't it?
So it was the end of the summer term and time for Lola to take part in a sports day, and a little production at preschool. I was so excited even though I knew she would not do it! The production was based around nursery rhymes. Which she was singing all day long at the top of her voice. She would practically wake up singing, I swear it was like having a little musical alarm, it was the sweetest thing, to hear that coming from her mouth as soon as she'd opened her eyes was amazing! We went to watch and got seats at the front, as you do! It all started and she froze, she couldn't sing, clap, stand, anything, "she was only little all children are like this" would be the reply to anything that was different about her. I hated it! It was dismissive, I didn't need things sugar coated for me, I wanted cold hard facts. I needed to know what my child was like without me, not the watered down version but the warts and all version! be honest with me, tell me the truth. I'm not going to cry! Honestly! (Well not in front of them obviously) I swear I felt like everyone was conspiring against me. Why didn't they want to see what I saw. Why couldn't they open their minds? Just a little bit, and realise that actually when you have 30 children in a class and she's the only one "doing" these "things" then it isn't "normal" and all children don't do it!!!!! Logic tells you that right? So why could they not believe!!! Arghhhhhh! I was so frustrated! I needed support. I cried that day! I cried for myself and I cried for Her. I cried because it was a realisation that even though no one believes it was autism! I did, and I also knew that this wasn't going to be the only production she froze in. And that I probably wouldn't get to see her do many plays, or carols, or sports day. Can you Imagine that? It's heartbreaking!
S does fabulous in his plays! He loves them, when he does an assembly he's always up, straight, and loud and clear! He makes me so proud up there on that stage. And Moo is a born entertainer, but that doesn't take away the upset and the disappointment of not seeing Lolly open up and perform.
It was sports day next, and we were so shocked, She participated in most of the activities with extra support. She did amazing! I cried that day too out of sheer excitement and enjoyment! They then had an entertainer and party food and she enjoyed herself so so much! She sat at the front and watched the whole thing avidly. You know when they ask for volunteers but say "you must be sat down on your bottom" and She is always on her feet before the instructions and she never gets a go because she's not listening! I feel so sorry for her! She tried so hard that day, to listen and do as she's told. But sometimes she just can't contain herself. She fidgets, instructions get lost, she mis-heard,Misunderstands. But that didn't matter because she was just disruptive and naughty! She should listen more and then she might get picked! Yeh right!
Summertime, and the holidays, a chance to spend time with your families, days out, picnics, the park, shopping, meeting to with friends. We stayed in. The whole summer. Apart from when we went to Ibiza for my brothers wedding.
On the 25th June 2013 Lola had her appointment for hyper mobility. It was an eye opener, they done some checks on her and yes she was hyper mobile, quite severely actually, her beighton score was 6/9 which means she was hyper mobile in 6 out of 9 joints and also had flat feet. She was referred for shoe inserts. The paediatrician also asked me about her behaviour. She was trying to escape, she was climbing on the notes trolley, she was turning the taps on and off full blast she kept trying yo draw all over her notes and be the doctor! She was erratic! I decided to treat Her in front of the pead as a normal child and so I told her off. I got down on her level, put her on the naughty spot and told her she had to wait three minutes because she was naughty! Lola screamed and growled at me, she spat in my face and all down her clothes and legged it for the door! Normal??? I think not! The paediatrician agreed and said she would refer us back to the DR we saw before! Um I think not. I never wanted to see that woman again! So she referred us to another paediatrician. I was so happy! I could have kissed her! And when I received her report well I was so relieved!
It states "mum has tried managing her appropriately with time out which does not have any effect" Yay!!!!!!! Some one finally on my page! Who would have thought it? Certainly not me I was expecting another knock back, another "no she's just naughty here go on a parenting course" which I still had to do by the way to prove I was willing to try all strategies offered to me! I was even told by the HV that if I didn't attend the referral would be taken away!!! (more on the course later)
So Ibiza! ! It was lovely to get away but wow! Full on! Screaming all night. Every meal time was exhausting. The whole time round by the pool we were on edge! We couldn't settle. She is a proper water baby always wants to be swimming, in the deep end no less! So one of us would have to be in there with her. The evenings were a game of cat and mouse! She would frighten the lives out of us it took a second and she would disappear! Just like that! S learned to swim! I was so proud! He was so confident and he loved it! and Moo took her first few steps too. It was a holiday of milestones. and a bloody expensive one at that. But it was amazing to be abroad with my whole family and make precious memories.
I'm just going to go back a few months and bring you up to speed on another factor of our lives that we had been shoved hard in the face by! Kenny was having some tests. He had a problem with walking and his legs hurt. He'd had this problem for years but after the trauma of the broken collar bone it made it progress more quickly (that's my theory anyway) he was really struggling. Things were bad anyway with Lolly but Kenny's mobility had gotten more noticeable by the day, people were picking up on it and it was hard! He went to his GP who done some tests on him and referred him to a neurologist straight away. We had the first appointment before our holiday and the consultant didn't give much away, we (I) asked lots if questions but he refused to name any condition until he'd had further tests done. They sent him for a cord scan. We had that done before we went too and just had to wait for the results! It made a tense holiday! I was worrying so much! And so was Kenny. We had so little time for ourselves that we hardly spoke about it!
We landed in England and hit back to reality quite sharpish. It was Moos 1st birthday and Lolly was due to start school. We also had an appointment through for Kenny's results, which they had marked as urgent. We had it hanging over our heads the whole time we were away like this massive elephant! Did he have cancer? What else could it have been? It wasn't long before we were given a pre diagnosis! And we both felt like our world was crashing down!
Chapter 8 part 2
Back and fresh from Ibiza carrying the most violent sick bug! (which we didn't realise) and it was Moo's 1st birthday, we had one day to organise a birthday party, and we did it!!! It was a huge success. Apart from a few guests and all three of mine catching this bug! Luckily it passed quickly and they were able to go back to school. It was Lollys first day at reception and she waltzed straight in. That didn't last long as soon as she realised it was long term she started getting upset and screaming every time I left which is normal right? Of course it is, she’s only a baby. Some things were normal. Other things were not and once again her behaviour at home deteriorated. Quite dramatically!
S was in year 2 and he liked his new teacher! (So did I) because I knew her name and I knew that she wasn't going to change every 5 minutes!
In the summer holidays Kenny had been sent for a cord scan. And the results were back in. We went to the appointment and were so nervous. I honestly couldn't get cancer out of my mind! We still hadn't spoken about it. It was just there like a third body with us everywhere we went. It was In bed with us, in the car, it came on holiday and When we went shopping this thing wouldn't allow us any space, we didn't know what it was, we couldn’t get rid of it. Nobody invited it to stay but it did! It didn't care that we didn't have time for it, or energy. Apparently it belonged to us! We weren't getting rid of it anytime soon and it was only going to get worse!
Primary progressive multiple sclerosis! Is what was (pre) diagnosed. Going by the symptoms and how long it had been there for. Suddenly this thing had a name. And it really wasn't something we wanted to hear! Id heard about this disease, I knew what it was capable of. This is why my world was crashing down. I could see into the future with just four words. I knew what was going to happen and it wasn't going to end happily! I felt sick!
Kenny on the other hand didn't have a clue. He didn't know what the prognosis was. He was blind. I never told him. I just said it wasn't nice. And then I let google do the talking. We walked out of the neurologists office in a daze, hand in hand, no words were spoken between us. We didn’t need words. The neurologist had just apologized to us. It was serious. The walk back to the car is a bit blurred. It felt like an out of body experience. Like someone had a remote control for us and we were just doing what was expected. What was expected? Where do we go from here? I couldn’t help but think the worst. It was impossible to imagine anything else other than Kenny becoming totally dependent on me. In a wheelchair, not working, not going out, housebound. I couldn’t get these images out of my head. Every single night that big elephant was back in the room again.
I said it was a (pre) diagnosis because the consultant just wanted to confirm things with tests. So he was referred for an MRI scan and lumbar puncture.
In the meantime, S got a bout of tonsillitis, so I took him to the west call, and a GP examined him, whilst doing so she noticed some birthmarks over his body, and asked if he had anymore. When I said yes, and showed her, she said that I need to go to my GP and request a referral to the childrensneurologist for a condition called neuro fibro matosis (which is all one word) when I got home I googled! Even though she warned me not to! And god I wish I hadn't! I was so scared. He had symptoms that seemed to relate with this as I was also noticing some ASD and sensory signs. It wasn't because he was copying Lola, it was because of Lolly that I had researched and realisedhe's been doing things since way before she could. So I now had another member of my family under some sort of doctor! You'll now understand why Moo is 2 1/2 and I never turned up for her toddler check up! (We still haven't been)
I also started my parenting course in September of this year (2013) I have to say and excuse my French for my parents reading this but what a load of bollocks!
I was not a bad parent! Every technique they'd suggested i already did! This course was not for me But I had to do it, If I didn't I would be taken off their lists. So I carried on. The second week in, there was a note on the door of the crèche saying there was a case of slapped cheek, so I questioned them about it. I wanted to know if it was clean. They probably thought I was being a para Pete but Moo was so poorly, even if I had a bunch of flowers in my house she would instantly have a high temp runny nose and cough! I swear I'm not exaggerating. Her pollen allergy was unbelievable. Worse than mine and that's saying something! They told me it would be fine, the case was in the nursery and it hadn't travelled this far, I should have trusted my instincts, which were to turn around and go home. But I couldn't I had to see this through for lolly, she needed this! Even if it was ridiculous. I had to do it.
That night Moo ma, my poorly little baby started coughing, it came on so quickly! This was Tuesday. By Wednesday morning, she was covered in a rash and boiling hot. Doctors said it was viral. (obviously)She was having maximum doses of calpol and nurofen, she was completely naked and had a temp of 40 I was struggling to bring down. I was circulating air in the room with open windows. She was very poorly. By Thursday, I took her back to the doctor who again said just viral! On Friday, I phoned 111 because she was gasping for breath and she had a rash, she couldn't breath her breathing was very laboured. She kept coming up in really weird looking red blotches, under the skin. They were almost like scald marks. And she was just asleep. Taking little water and not even opening her eyes! She was just laid on me exhausted, lifeless! They sent her an ambulance, and we were taken to the hospital. She was being sick where her temp was spiking constantly. When we got there they examined her and kept her in for observation because of the rash, she was all smiles when we got there, like they are. Over protective mummy over reacts again, I was on my own because we needed Kenny to pick the others up from school and after a while my mum and sister turned up. I had already told the pead that I wasn’t confident enough to take her home and that I wanted Her kept in for observations at least until late afternoon and she agreed, once she saw I had other there she basically forced me to leave with Moo and under pressure I agreed. Stupid mistake, as soon as we left She deteriorated once again, and by Saturday morning I took her to the walk in center. She was being sick everywhere from her temp spikes and even with calpol and nurofen her temp was spiking every hour. So even the medicines weren’t working. It was about an hour ans we were seen again and sent home. The journey and disruption had woken connie and she was all smiles. Typical. Once home she slept all day, I mean all day, she didn’t feed, she didn’t wee, she didn’t do nothing at all just squirmed around on the sofa, asleep for hours and hours. I had seen over 5 doctors this week and not one of them thought she was of any concern because not one of them could be bothered to observe her for longer than 30 minutes. By midnight on Saturday I had had enough, she was practically lifeless. Temperature of over 40 after having both calpol and nurofen and she wasn’t drinking and was not waking up for me. I went and picked my mum up and we took her to A and E where once again we weren’t taken seriously, doctors were just wondering around, not even concerened we were there. She was being sick, burning, and lifeless and some prat of a teenager had decided to take ecstasy and so had 5 doctors all for himself. By the time they got to my poor baby, her blood pressure was through the roof! She was severely dehydrated and not rousable. They inserted a cannula into her arm and she didn’t even wake up!!! I was fuming! When the doctor came around to see her, she was poking and prodding her and sitting her up and She was just falling down back onto the bed staying asleep
They ordered tests for her ASAP. Meningitis was what they thought. Lumbar Puncture is what they were going to do. I was terrified. She looked so tiny. Just lying there in a massive cot all wired up. I’m so thankful that my friend was working that day and I asked her to hold Moo during the lumbar puncture for me as they wouldn’t allow me in there.
Walking down the corridor in those first minutes after she was taken was the 3rd worst time of my life! Remember the other 2? I could have collapsed,all my energy was zapped out of me. My legs went to jelly and I have no idea how I even made it back to her room. Within 15 minutes it was all over and she was back in her room. It wasn’t meningitis. It was tonsillitis! Can you believe it?? All that for tonsillitis, if they would have just given her antibiotics in the beginning then I very much doubt it would have gotten that far.
So Kenny's results from his brain scan came back clear!!! We were overjoyed! After talking about it and reading it through we never believed it was PPMS anyway! Doctors are always wrong they could be with us too couldn't they?
To be continued .........