I had no qualms in phoning the people from the parenting course and telling them I wouldn't be back, and also the people who organised it too! I was so annoyed at the whole situation! Being forced on a course, where my youngest picked up an infection that completely knocked her for six was so awful! I had to make her my priority.
It was a very busy end to 2013, we had an appointment with another paediatrician for Lolly; the referral from the paediatrician that diagnosed Her hyper mobility properly, and also referred us for some insoles for her shoes to help her walk.
We were really apprehensive about this appointment we needed for Lolly to be herself that day and show them what we saw!
That didn't happen did it?
You know when you have a young baby and you are really worried there temp is sky high they have a rash and won't stop crying? You get to the doctors and what happens? Their temp has reduced from the cool journey, and so when they arrive they are all smiles and coos and dribbles, and you're sent away as an over reacting mummy! arghhhhh
This was one of those days, she was hard work, but she was compliant, did everything she was asked, had good eye contact, and more importantly she passed the "Sally Anne test"
For those of you who don't know this, it's a little test for youngsters who are being reviewed for being on the spectrum, and it looks at how the mind works and whether they have a thing called "theory of mind" where they are able to put themselves in the shoes of other people and think like them. A better explanation taken from The net is:
When I received her report I googled the Sally Anne test and realised that actually She hadn't passed this test! She failed it. But for some reason I don't know whether the paed was having a bad day or just got mixed up but Lolly chose the answer that a child with autism 'would normally' choose. God knows! But I was really frustrated about this, I felt like this was a last chance saloon, and we were being chucked out the door again! But she kept lolly under review and she had referred us to an Occupational health therapist because She was really clumsy and kept bumping into things, and had poor fine motor skills.
Pick up time was really bad for us too, Lolly was all over the place, I had three of them and it was hard, I'm not going to lie, I cried silently on the way home lots of times. I was in bits, school saw no problems with Her. She was model pupil! Always polite, had friends apparently, was working well, turn taking. Being a good girl. "She's young " “all children are like that" were the replies I got when asking them things, all my concerns were brushed under the carpet. Now I'm not going to go into too much detail about the school, just like I'm not going into too much detail about some other things Lolly done, purely out of respect. But let's just say it wasn't a good relationship. Which made things 100 times harder! I was having to pick Her up and carry her out of school kicking and screaming nearly every single day, whilst pushing a buggy, and watching S too, who would, as it happens just run off, hide, be a bit of a pickle. Etc! People would stare at me, children would ask questions, i felt the teacher’s eyes boring into the back of me every time i walked out. I would dread that time! I never found a good pick up routine, because I had S at one end of the school and Lolly at the other it was hard to get the balance right, and by the time id got to Her she would be at breaking point, hitting Moo and S in the car, in the end S would sit in the front so she couldn't get to him, she would scream and scream until we got home and she could get into her PJ! Then she'd be comfortable and calm down a little! (I never realised this though until later on)
Lolly would be so exhausted from her day of pretending to be "model child" that she would fall asleep. Completely wiped out!
We were struggling as a whole family to do anything! Anything angered her, I mean anything. All day long we placed demands on her without realising what we were doing and because she wasn't in control she got worse. I use this sentence a lot in these chapters, but it really did get worse and worse and worse. Things were heightened at the beginning of a school term and the end of a school holiday. We soon noticed a real pattern of behaviours.
At the same time both children were issued IEP's (independent education plans) it's a document that a child who has special education needs has to breakdown their leaning into smaller constituent parts to scaffold their learning. S was really really behind! I was quite concerned and questioned dyslexia, and ASD, and was brushed off. Nope he's just a bit slower and will catch up. Or so they thought! But I have to give S' year two teacher praise because she picked up on his SEN straight away and actioned more help for him, which I'm really grateful for. She was lovely, and listened well and had really good communication.
Kenny was asked to go for a lumbar puncture too, to confirm multiple sclerosis. His consultant neurologist was sure that this was his diagnosis and was expecting the results back as confirmation so we could get a care plan put together! Sounded really final! We weren't talking about it, at all. We pretty much ignored it. We had one drunken conversation where we both got a bit upset but that was it! We just supported each other the best we could. Again our lives were like we were being remote controlled! Looking back on it we were like robots! Just about hanging on to each day and scrambling through, dealing with things as they arose. We were having lots of appointments at this time. His lumbar puncture wasn't until the next year in march, and we had to get through Lolly OT appointment and Christmas first.
Lolly's appointment with the occupational health therapist was a real eye opener! It was the beginning of the beginning and finally I felt we were beginning to piece together my little princess!
I was asked to fill out this questionnaire like paper, whilst she done some things with Her, some little games, and drawing, and sorting little pegs and stuff. I filled it out for her and sat in silence because I asked to take a back seat and let her get on with it. Lolly took to her really quickly, she was a lovely lady, always smiling, and cheery and happy and she understood! She looked at my questionnaires and done the scoring on it and was shocked! In the referral that was sent to her about Lolly stated she had no sensory issues. Well my questionnaire seriously contradicted their referral and we were told She suffered pretty majorly with sensory processing difficulties. I had no idea what this was really, I hadn't researched it and I didn't know any techniques. It was a complete shock to me, she also noted that were awaiting an autism diagnosis and I thought this was a pretty good statement because I hadn't told her this, she must have been told it in the referral someone somewhere had Her on their radar and we were within sights of a diagnosis. I was invited to attend a conference about SPD along with Lollys teacher if they wanted to attend, and the report and an invite would be sent out to them. She noted that whilst I was doing the form and she was playing with Lolly, that she asked what a noise was, (it was an ambulance in the very very background) and the OT could barely hear it. Lolly is very sensitive to sounds. This was a classic example and glad it happened on the day. She also noted Her language delays and lolly asked the OT "are you an ambulance " which meant "are you a doctor" lol bless her heart! It was so sweet. She gave us so many strategies and leaflets and stuff and I went home and I researched the life out if sensory processing disorder. I joined support groups to gain as much knowledge as I could to help her. I brought chew toys for Lolly a den so she could have a calm space at home, I filled her bedroom with bubble lamps, and lava lamps and little dairy lights, and spinning toys, and anything else you could imagine. The first two nights after she had her den in her room she slept in it fully all night long! I swear I could have kissed her therapist! I was ecstatic! It didn't last! Like most things with Her we have to have a good turn around with things otherwise her body gets used to then and they don't have the same effect. I brought her a weighted blanket, again she slept through for about a week. And then she didn't like it anymore and refused to use it. I done deep pressure massaging after a calm got bath and we settled into a great routine! Lolly would make me play this game where I would rub, tickle, scratch, her legs according to the colour of the lights in her bubble lamp, every night I would rub and then tickle and then scratch, when she said so. It was so tiring but it was working, and her funny little ways made me so happy because when she wasn't pretending to be someone she wasn't and she was being completely Herself she was just so scrumptious. The deep pressure massage really calmed Her down, I couldn't believe that a 4 year old was enjoying a massage the way she did! I have a voice recoding of lolly during one of these massages and it's so funny. I think this was the bed time routine that she liked the most. Apart from her wibbly pig one,
Her wibbly pig one - she had a set if books and would only let me read one of these books, called wibbly pig can dance, and after a wobbly two weeks if her trying to be in control and be the mummy, and snatch the book away and turn the pages, or read it, and make me sit on the floor, she settled down and we got a good routine going. She would fall asleep as soon I read the book. I read this book to her more than a hundred times and I had to read it in a specific way, very very specific and if I didn't I would have to start again. Can you imagine this at 7pm every night after a full on day with her a screaming reflux, dairy intolerant baby and talkaholic S. It was torture! But we for through it.And into the next routine!
So the recommendations from the OT. Were put in place, and it was such an eye opener, everything completely made sense, she was sensory processing disorder, the books were written about her! Why hadn't I known about this! Why hadn't someone else picked up on it? Such a waste if two years in the NHS system and no one picked up on it! She was just an extreme version of normal! So flipping annoying! Lolly's teacher and I went to the conference and she was shocked! In the middle of it she leant over to me and whispered "that is so your daughter"
Was it finally becoming noticeable? Were we going to get some help now? People were seeing and believing surely things would all come together and the school would support me in a diagnosis and put more recommendations in place? What are the odds are on this? Anyone care to hazard a guess?