Eljay's Struggles with SPD
Getting ready to go places is a real issue for Eljay. It can take what feels like forever and a day to get out the door. This is why I start our school day at 5:45. Don't get me wrong, we have good days but I have to make plenty of allowance for everything which may or may not upset Eljay.
She will only use one particular brand of baby tooth paste when she brushes her teeth, and it took years to even get her into this routine.
Water
If Eljay gets even a small amount of water on her uniform, she will immediately take all her clothes off (it happened three times one morning!). She will also need complete control of the washing, like she will more than likely want to wash her own face, but on occasion she will ask me. She will also be very vicarious in making sure flannel is wrung out to her standards.
This also makes me think of water fights with other children she wants to join in but when someone squirts her she will get really upset.
Clothing, Noise, and Family Life
Socks and shoes are the worst! We have so many unworn shoes because a little tickle will feel so unbearable to Eljay she may never be able to bear the thought of putting them on her feet again. It quite literally took Eljay years to understand the need for them and in every baby picture you see you will see her carrying them around but never wearing them. She will often just refuse to wear them.
Hair: she will never wear a plat or pony tail hair must be lose. She will wear an Alice band but has to be totally smooth.
She will find a favourite piece of clothing and want to wear it over and over until it no longer fits or there are holes in the knees.
As for her uniform, even if she wears the same everyday, a loose piece of fabric or not enough softener may mean it's just not right. Hence, my early start. Now of course I have a choice: I can insist that she puts those socks on, physically make her get dressed but this would escalate into complete meltdown and a very upset mummy and a little girl who then would not be able to go to school at all. You could find yourself in a two hour tantrum which would end with Elay falling asleep, because she'd got herself so upset.
It's absolutely heart-breaking and I have decided easier to try and understand and accommodate. That is the easiest option for not just me and Eljay, but also for the teacher I might have to hand her too, as it will have an affect for the rest of the day. I don't think Eljay is being difficult or naughty; she just finds these things upsetting.
We are a noisy family. Eljay has two siblings: Beau, her sister who is fourteen months older and in the year above at school, and Liam, her fourteen year old brother. We have a dog, a cat, and a very sociable mummy and daddy. So she has had to get used to noise. But it's still a major problem and one she needs to control to be able to cope.
Revolving Glass Doors
We won't be forgetting our trip to NYC for our wedding just weeks ago. It was just too much for our little girl - meltdown everyday nearly all day! She woke up smiley, happy and gorgeous, but it would start as soon as we left the lift.
Eljay wanted to get in the revolving glass doors, but only if it was with a member of her family or someone she knew very well. A stranger was just not allowed. And if they did Eljay would just lose it, scream, throw her self on the floor, get angry, and shout. We would have to wait until it was less busy, so we could leave or enter the building. This happened every day for the week that we were there. And all the time I was explaining that a city is a place where we can't control who we might see or bump into, and that everyone who wants to use the door doesn't have to wait until we are out.
I explained that her behaviour was not acceptable and how it makes us feel when she behaves that way.
I am pleased to say that, since being back the UK, Eljay has had to face her revolving door challenge again at a hospital appointment. This time, however, when a lady got in, she wasn't best pleased but expressed this with just a sad and disappointed face. Sharing the revolving door was a new experience; in her mind, everyone had to take turns. She simply thought that taking turns is what you do. And the people who got in were breaking the rules.
Importance of Routines and Accomodation
It's been like this for every single new experience. She can and does learn but not instinctively or intuitively like other children. That's why it's so important for Eljay to have routine. When I think now of her biggest meltdowns, they are away from home. They happen most when we visit places like theatres, museums or restaurants that serve food in a different way.
Eljay needs more explanation, more experience, but she does and can learn it just takes longer than most.
Smell is also a disaster. New York is a good recent example for us.
We would opt for the cheaper option of a local restaurant for breakfast. When I say local that would depend on how far we would have to walk to find to restaurant that Eljay would smell approve! This may sound like madness, but, trust me, the alternative of trying to make her go into an upsetting environment is just not worth it, especially on holiday!
I stand my ground with Eljay, and that's why she's come so far. But there are times when I just want to avoid the meltdowns. Especially at weddings, I want to enjoy each and every moment.
If we go on a car journey and its rained whilst in the car, Eljay may then decide that the smell outside is just too unbearable. And she may refuse to get out until she adjusts, and if it had caught her off guard (i.e. I forgot to pre-warn her of the smell to come) it will take even longer. I have to think ahead.
We once took her to a beach in the UK where she held her nose for the whole day. It was still a good day, because she had found away to cope. Some days she doesn't find any way to cope, and life is very hard for her and, quite honestly, for us. I always, as a parent, try to concentrate on the positives, but I think that might be why it's taking me so long to get help for our little girl.
Animals
Another way in which smells have effected her greatly is with animals. She will enjoy a picture, but would prefer not to meet them, as she thinks of them as smelly, even her own dog. She says, "I wished I liked them but they are just so stinky." Rainforest exhibits are a complete no go area, even to see the cute monkeys. Not allowed in!
She can get over these things, but it's never easy and will always take a long time. For example Eljay's sister started to take horse riding lessons. At first, Eljay wouldn't get out of the car or even come along. After a while she would, but only if she held her nose. She still showed signs of discomfort, but she kind of enjoyed the stables and, after many weeks, she decided that she would like a lesson. Hooray!
But something else seemed to happen: she appeared to go into an almost trance-like state on the pony. We don't know if this was the smells noise, or the movement, but she wouldn't follow any of the instructor's direction. She also refused to get off the pony.
The instructor said he had never experienced anything like it before and left her on for a while longer, but she stil wouldn't come off. Eventually, daddy came and tried to reason but every time he went to touch her she would meltdown. He then removed her and the meltdown that followed was huge and very long with calls to mummy from daddy for advise.
Other Adults
When Eljay has meltdowns like this, people haven't seen the whole picture. The above situation was one where people were helpful, but normally the treatment we receive is very negative, especially now as she gets older.
The amount of people who come over and say comments like "If that were my child she wouldn't behave like that" or "That child needs a good smack" astounds me. There is no end to the comments that people seem to think they have the right to bestow on you. In fact, it's adults who get me down.
I have nothing but love and concern for Eljay. She is a kind, loving, sharing, caring and very smart little girl. She just sees the world or feels the world in a different way. But she has been learning to cope since she was only five. Over time, I think, with help, she can find her way of dealing with it.
More Sensory Challenges
Eljay seems to have little volume control in her voice, and she has to be constantly reminded to, as we say, "turn the volume down." But when she hears a loud or unexpected noise, she may react in a slightly odd way. In fact yesterday in a shop there was an unexpected and loud announcement which she responded to by shouting a very loud "ssshhh!"
Smell sensitivities can result in odd behaviours. She used to make very loud animal noises all around the supermarket. I kept asking her why, and eventually she said it was because of all the meat.
Also, she loves to make a rocking motion. She has done this from a tiny baby and I remember a lady in a supermarket asking me what she was doing with her legs. it's only now that I realise it was probably Eljay's way of, even then, dealing with being in a supermarket. I have noticed that if Eljay doesn't do this rocking motion, like in New York, her behaviour is far worse. It's like the rocking helps her somehow.
She also sometimes tunes out whilst at school and when she is singing in her school assemblies.
Swings and Rides
As for swinging at the playground, Eljay has only ever wanted to go in baby swings. She tells me now that it's because she doesn't feel safe on the more adult swings. Before I knew, this we recently went to a beer garden and there wasn't a baby swing. Eljay decided that she would like to have a go.
I was really pleased because mothers with younger babies were beginning to give us some really funny looks. But all did not go well; she asked to be pushed higher and higher and was almost euphoric with pleasure. Then, she just let go in mid-air. Fortunately, there was far more wood chip than you usually get, so there were no broken bones. Still, since I was the one who was there when it happened, she perceived it to be my fault.
Only Daddy was allowed to pick her up. She does this every time she has an injury; she won't want anyone to touch her until she is ready, and she will normally want it to be someone who wasn't there at the time. Also, if she has a small cut or sting, it can drive her mad and yet when she lost her whole toe nail under a door she didn't cry and even seemed sleepy and relaxed.
In New York, we took her to the young children's rides. Eljay also struggles with choosing, so as this was a new place, she looked at every single ride at least twenty times until she chose what she was going to go on. After choosing her ride, Eljay, just like with the swing, seemed to get so much enjoyment from it. However, then I noticed she didn't seem quite herself. She seemed not to know where she was.
I now think this is why she let go when she was on the swing. So I am not going to let her go on fast rides unless I can accompany her.
The Effects
How all these symptoms affect Eljay's behaviour? Well she was suspended from school at four for scratching a classroom assistant in the playground. I think she responds really badly to unexpected noise. Of course, there are lots of noises in a playground. Also she can get incredibly over excited by movement. Playgrounds, of course, have plenty of that too.
But angry voices and shouts are probably the worst. She responds with what I can only describe as a survival instinct, which is mistaken for bad behaviour.
My friend jokes that if she were to be alone in the slums of India or somewhere, it would be Eljay she would choose to look after her. And she is right. Eljay would survive. She would find the food, provide for her family and defend you like no other. She has almost animal survival instincts. But she is not malicious in her intentions.
She rushes her work at school because she wants to finish first. She wants to go first in line and is anxious if she's not. She can cope with taking turns and her teacher uses the order of the register to do this, but if the order changes by someone pushing in to the front, Eljay will just lose it. She tries to control her environment, but of course sometimes fails and finds it hard. But she is learning slowly but surely.
I have so many other observations to tell you, but wrote this for a start.
Success at School
I feel that I may now have found a school able to deal with my daughter's needs. They are warm, friendly, and understanding. A huge wait has lifted from my shoulders as the anxiety and lack of sleep that has been caused by her school misunderstanding my daughter will hopefully now disappear.
My little girl has a lot to offer and my advice to anyone whose child is surrounded by negativity is to first advocate as much as you possibly can. But if it's not working, just get out!
A good school will focus on a child's strengths and understand their differences. Let your child know the school is not good enough for them and that the problem lies with the school and not them. Unfortunately, SPD is not really understood in the UK, but I have managed to find an international school with their own occupational therapist. Both my girls will be attending a trial day there soon, so fingers crossed.
After a year of me trying to work with the old school, I have given up. The final straw was last week, when I got a phone call saying my daughter had had a bad day and pinched a girl on the stairs, then scratched someone in the playground.
When I asked if my daughter had any support during transitions between classrooms, the teacher said, "No I was on my own." When I asked where my daughter was in the line, she said she wasn't sure. Then, when I asked why she couldn't have held her hand during the transition, as it's a situation my daughter struggles to cope with, she said "being at the front is a privilege!" It's probably no coincidence that it was the same girl she then scratched. Although I can't say for sure it wouldn't have happened if she had had the support, I think there is a very good chance it may not have.
They have had an educational psychology report for over a year stating her difficulties, and they continually ignore the advise. They now have a diagnosis and the ways they can help her clearly written in black and white, help but they choose to ignore the information. This, to me, is both negligence and discrimination.
My daughter deserves better!