After the horrendous hospital visit we had with Connie after using the crèche at the parenting course 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 of being forced on a course, where my youngest picked up an infection that completely knocked her for six was so awful, being forced to go on a course that would make no difference to my child whatsoever, a course designed for parents who are struggling with behavior or having a hard time parenting, a course that would NOT benefit a parent with a child with autism. I had to make her my priority.
It was a very busy end to 2013, we had an appointment with another paediatrician for Lola through; the referral that the paediatrician who diagnosed Lola’s hypermobility had also referred us for some insoles for Lola’s shoes to help her walk. She was very clumsy and was always knocking and bumping into things and falling over.
We were really apprehensive about this appointment we needed for Lola 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 that their temperature is sky high and 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 overreacting mummy! 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 assessed for ASD, 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: The Sally Anne Test
When I received her report I googled the Sally Anne test and realised that actually Lola hadn’t passed this test! She failed it. But for some reason, I don’t know whether the paediatrician was having a bad day or just got mixed up but Lola chose the answer that a child with autism ‘would normally’ choose. God knows why this mistake happened but I was really frustrated about it. I felt like this was the last chance saloon, and we were being chucked out the door again, but she kept Lola on review and she had referred us to an Occupational Therapist because Lola was really clumsy and kept bumping into things, and had poor fine motor skills.
School runs were awful….
Each time we had to go and collect Stanley from school Lola was really difficult to manage, it was really bad for us too, to be able to cope with it mentally, she 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 as the school saw no problems with Lola. She was a model pupil! Always polite, had friends apparently, was working well and turn-taking. Being a good girl.
“She’s young. “
“All children are like that”
“There are worse children than her”
These were the replies I got when asking 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 Lola did, purely out of respect. But let’s just say it wasn’t a good relationship, which made things 100 times harder. I felt alone, I felt unsupported, and I felt really, really let down.
I was having to pick Lola up and carry her out of school kicking and screaming nearly every single day, whilst pushing a buggy, and watching Stanley too, who would, as it happens just run off, hide, and be a bit of a pickle. 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 Stan at one end of the school and Lola at the other; it was hard to get the balance right, and by the time I’d got to Lola she would be at breaking point, hitting Connie and Stanley in the car, and, in the end, Stan 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 pajamas.
Then she’d be comfortable and calm down a little! (I never realised this though until later on).
Lola 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, everything angered her, I mean anything at all. 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 (Individual Education Plans) it’s was a document – at that time – that a child who has special education needs has, to breakdown their learning into smaller constituent parts to scaffold their learning. Stanley was really very behind and I was quite concerned and questioned dyslexia, and ASD, and was brushed off once again. ‘Nope, he’s just a bit slower and will catch up’ Or so they thought, but I have to give Stanley’s Year Two teacher praise because she picked up on his needs straight away and put in place more help for him, which I’m really grateful for. She was lovely, and listened well and had really good communication.
Back to the investigations for Kenny.
Kenny was asked to go for a lumbar puncture 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. It all sounded really final and 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 and 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 Lola’s OT appointment and Christmas first.
Lola’s appointment with the occupational 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 a questionnaire, whilst she did some things with Lola – some little games, and drawing, and sorting little pegs and stuff. I filled it out for her and sat in silence because I was asked to take a back seat and let her get on with it. Lola took to her really quickly, she was a lovely lady, always smiling, and cheery and happy and she understood, something which, as a whole family, we were really lacking from all sides professionally. She looked at my questionnaires and did the scoring on it and was shocked because in the referral that was sent to her about Lola it stated she had no sensory issues. Surprise, surprise. Well my questionnaire seriously contradicted their referral and we were told Lola 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 we 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 Lola on their radar and we were within sights of a diagnosis.
I was invited to attend a conference about Sensory Processing Disorder along with Lola’s 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 Lola, that Lola asked what a noise was, (it was an ambulance in the very distant background) and the Occupational Therapist could barely hear it. Lola is very sensitive to sounds. This was a classic example and I was glad it happened on the day. She also noted Lola’s language delays and Lola asked the Occupational Therapist “are you an ambulance ” which meant “are you a doctor” bless her heart! It was so sweet. She gave us so many strategies and leaflets and I went home and I researched the life out of sensory processing disorder. I joined support groups to gain as much knowledge as I could to help her. I brought chew toys for Lola, a den so she could have a calm space at home, I filled her bedroom with bubble lamps, and lava lamps and little fairy 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, but it didn’t last!
Like most things with Lola we have to have a good turn around with things, otherwise her body gets used to it, and then and they don’t have the same effect. I brought her a weighted blanket and again she slept through for about a week and then she didn’t like it anymore and refused to use it. I did deep pressure massage after a calm, hot bath and we settled into a great routine.
Lola 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 Lola; she was just so scrumptious. The deep pressure massage really calmed Lola down, I couldn’t believe that a 4-year-old was enjoying a massage the way she did and I have a voice recording of Lola 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 of books and would only let me read one of these books, called ‘Wibbly Pig Can Dance’, and after a wobbly two weeks of 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 7 pm every night after little to no sleep the night before due to her constant screaming, a full-on day with her and a screaming, reflux, dairy-intolerant baby and talk-a-holic Stan? I was being ground down, but we worked through it. Then onto the next routine.
The recommendations from the Occupational Therapist were put in place, and it was such an eye-opener, everything completely made sense, she did have ‘sensory processing disorder’, the books were written about her. Why hadn’t I known about this and why hadn’t someone else picked up on it? Such a waste of two years in the NHS system and no one picked up on it, I felt she had been failed. She was just ‘an extreme version of normal’. It was so flipping annoying. Lola’s teacher and I went to the conference and she was even 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?