So we carried on, we had to just get through it; my daughter was still up every single night about 20-30 minutes after she’s fallen asleep and every half hour thereafter until the early hours. It was awful; I hardly ever had any sleep. Just one night I would have liked, but still, she wouldn’t allow Kenny to take my place, she was completely dependent upon me, and then we would wake up and she would refuse and refuse to get dressed for the morning trip to take Stanley to school. My youngest who was 7 months by now was a complete daddy’s girl, and it’s not surprising really as I had very little time.
It was her socks that caused the most problems.
I did not know or understand what I was doing but every time I was putting her socks on she was screaming and shouting and hitting, she would take them off and throw them, it would take us forever to get it right. She couldn’t explain either. Her communication was still very limited. And although she was talking in sentences, it was all muddled up, and she could not convey her feelings. She would get things around the wrong way, say things in a jumble. Back to front and inside out, it took me months to work out this sock malarkey, but we have it down now, they have to be just right. Literally perfect and god forbid you don’t get it right. I’m glad she learned to do it herself.
Her shoes, too, had to be just right, the Velcro, straps, buttons, laces, or whatever it may be had to be just the way she wanted it. In fact, she has a pair of shoes (one of many) and if Kenny isn’t here she won’t wear them because I can’t tie the laces how she likes them, and exactly the same on both feet had to be matching: matching laces length, matching Velcro length, she would sit there for ages redoing the Velcro straps so they were equal. Do you know how hard this is to understand and get right when you have a child who uses growling and screaming for communication? She couldn’t say –‘ do it like this mum’ or ‘like that mum’, ‘no I don’t it this way mum’ and so forth. We used to get really stressed and annoyed with each other. If she wanted the music louder she would say “put the music on harder” and things like that.
I noticed I was having to repeat myself a lot, “Lola, Lola, Lola” she never responded to her name, if I wanted her to respond to me I would have to get on her level and talk, she would never look at me though she would angle her head to the side or up high and look above me like she wasn’t listening. The amount of heart-stopping moments I’ve had when I’ve heard the biggest bang and she doesn’t respond to her name, you call and call and call whilst running upstairs to find her sitting on her floor lining up some books. I’m like “Lola why didn’t you answer me” to be met with no reply, I just walk away, glad she’s okay.
That’s another thing we’re used to now, her unresponsiveness. We used to think she was just ignoring us. But children with autism or SPD take much longer to process things, so they need more time than ‘typical’ children. And even then, if they are engrossed in something they more than likely won’t respond anyway. Her hearing was checked lots of times actually, and her attention span was always noted at these appointments too. She constantly needed to be refocused, prompted. But she always had to be in control, always choosing which games she would use and which she wouldn’t. Her speech and language reports were the same also, the therapist always reported it was an inaccurate assessment due to her lack of attention and concentration, and she always scored low. At her review for speech and language Lola just passed all the tests by the skin of her teeth, and we were discharged.
She was age-appropriate for all the tests. However once again, her attention and focus were under scrutiny and her need for control was noted. She had to be in control, even in the Doctor’s office.
So getting my boy to school was proving more difficult, he was crying on the way in, this wasn’t like him, he was always bright-eyed and bushy-tailed for school, loved socialising. He was getting too difficult for the nanny as well, so now she had to contend with Lola, Stanley and a 7-month-old baby. Inevitably, the nanny quit; she couldn’t cope. Her sick days became more and more until eventually we just decided it best she never returned. She was a lovely girl too, but very young. I don’t blame her if I was allowed to quit I’d hand my notice in tomorrow (just joking)!
So now I needed a new nanny, and Kenny’s sister came to the rescue. She wrote out a report on Lolly which I’m going to add in here so you can see her from someone else’s perspective.
I used to be Lola nanny, I would spend 3-4 days with her a week.
The problems would start as soon as I would arrive at the house, she would straight away run to her baby sister and take food from her or take her bottle/dummy away, because of this she would cry then Lola would pretend to be the adult, sometimes she would just give the item back other times she would tell her sister off.
I always found it difficult to get Lola to sit and finish a meal, she would constantly ask for something to eat but rather than have something at a mealtime she would seem to graze on things all day.
When it was time to get ready for school Lola would find it difficult to choose clothing, it could be boiling hot and she would want to wear a jumper, sometimes she wanted to dress like a boy and wear her brother’s clothes. I was never able to dress Lola in anything with 3/4 length sleeves or legs as she would think they weren’t on properly, I also couldn’t put a short-sleeved top with a cardigan or jumper on top, it wouldn’t just be a case of Lola saying she didn’t like it, sometimes she would hysterically cry, hit me or someone around her or seem to get confused and tell her mum that I had hit her!
Lola would also have a absolute meltdown when putting on her socks if the line wasn’t lined up accurately and would also want to wear inappropriate odd or small shoes to school. If I told Lola that she couldn’t wear them her reply would be to tell me she’s not going to playschool or that she was going to tell her mum of me or she would just run off!
Jodie (Lola’s mum) would have to do her hair for her most mornings, or sometimes it took two of us, we would have to chase Lola round and she would scream at the top of her lungs saying it was hurting, we tried different things we got her, her own brush and new hair things, a spray for detangling that we told her was magic spray but still Lola would have such an ordeal just to get her hair done and would often get herself so upset about it.
When it came to the school run there was never an easier or preferred method; if we went in the car the first thing Lola would do is take her shoes off, she would sometimes throw them at me whilst driving. She would take things off her sister and she would constantly repeat something irrelevant, if I answered her she would say “what?” so I would repeat myself and she would ask “what?” again. If I asked Lola to repeat what I had said she usually could so she knew I had answered but didn’t even seem to understand that the question had been answered and move on, this occurred a lot throughout the day every day.
When walking to school Lola would want to always walk the same way, if we had to divert for any reason it would be very difficult to explain to Lola.
She had a few points during the walk were she would stop every time we did a school run without fail, I would often find myself collecting her from other peoples gardens, or if she met a stranger on the walk she would stop and stare at them and point, sometimes she wouldn’t say anything sometimes she would. If she took her scooter or buggy she would be quite happy with it every day up until an exact point on the road, if she passed it she would go back to that point to tell you she no longer wanted to ride the scooter or push the dolly buggy. She had no danger awareness and would happily stop in the middle of the road to check on her dolly or untie her shoe, she would be indecisive as well and get halfway across a road then decide to run back to the other side.
If I tried to hold Lola’s hand she would start by saying I was hurting her even though I would be gently holding it, she would progress into shouting and hitting and then would meltdown in tears on the floor or other times she would run off and I would have to chase her.
She would often shout at me or tell me off as though she was the adult, she would also often hit me in the face, or pinch me, she also used to pinch or hit her baby sister, Lola would get confused sometimes and tell her mum and another time told her auntie that I had hit her but it was Lola that had hit me.
I could never leave her unattended with her baby sister, she would try to carry her, take things away or hit her.
Throughout the day Lola wouldn’t play with toys, she would either follow me around or she would sometimes ask to “make a party” to Lola this meant spreading water sometimes with a paintbrush other times with her hands and feet on the patio.
Lola had a few habits that would continue throughout the day such as constantly sniffing, licking her lips, washing her hands, making scratchy noises with her throat and one, in particular, was constantly changing her clothing,
She would wet herself sometimes several times in one day even though I would ask her at least every half hour if she needed the toilet to remind her but she would always say no and rarely let you take her to the toilet resulting in her wetting herself. If Lola had to have her bowls open she wouldn’t let me help her wipe her bottom she would only sometimes let her mum but she didn’t seem to be able to do it herself, sometimes Lola would smear it on the wall, sink or toilet seat, most of the time she would come and tell you what she had done but other times she wouldn’t.
When taking Lola to preschool we would have the same ordeal as the morning school run with the changing of clothing and different shoes, wanting to take a scooter or buggy then abandoning it halfway. Once at preschool Lola would play alongside her friends but wouldn’t interact with them. If they were all doing something she would copy or mimic them, I can remember at one occasion some children were discussing a birthday party and someone said to her “you can’t come to my party Lola”
Lola didn’t understand that he had been mean to her and laughed and said it back, other children began to say the same to her but she continued to play alongside them and although she looked awkward as though she knew something wasn’t right she didn’t seem to realise what had happened.
She would constantly tell me I wasn’t coming to her party if I told her off or didn’t do something she asked me to do and it seemed to stick with her.
She could also be confused, sometimes she would give me a big hug and a kiss and tell me “you can come to my party now Jade” and leave it there, other times she would then change her mind mid-sentence and tell me that she didn’t love me and I wasn’t allowed to the party and would pinch or hit. I don’t think Lola fully understands most of what she is saying or what is being said to her as she seems to answer questions with something you may have said to her or that she has heard at school.
Overall Lola is a lovely little girl and can be very loving but also appears confused about how to act in situations or with people, she then doesn’t understand why she is being told off and will mimic you and tell you off.
She is very demanding and likes to be in control of the situation at all times and do things in a routine manner.
I wanted to share that with you because I wanted you to see it from another person’s point of view. I asked Jade to write this out for me in support of a diagnosis, I wasn’t there when she wrote this out and when I read it I was completely shocked, shocked that someone else knew my child as well as me, and had noticed all these “little” things that I was supposed to be imagining. I haven’t read this for a while and it brings back so many memories. There are things in here that even I forgot about, like the constant throat clearing or the sniffing. (Which have made another return in the time it’s taken for me to re-write my story again) They were all things that Lola was obsessive about, she did it day in and day out and when she’s anxious she licks her lips constantly causing her mouth to go red raw and sore.