Sensory Assesment for little Esmé

Meet Esmé, she is already fighting her own little battle, but she very much needs our help!

A little bit of Esmé & her families story, first hand.

Esmé.. where do I start with her. She is one of the most beautiful, amazing little girls I've had the pleasure to mother.
But at the same time.. she has been the hardest to live with. From being 18 months old... I knew there was something different about her. She was late to hit all her milestones almost. Didn't eat food until she was 13 months old or drink from a cup until 12 months. I just put it down to been a breastfed baby and been picky knowing what she wants. She was late to sit, never crawled and late to walk. All the charts the health visitor used to bring she wasn't on the lines or age gaps she should of been. I did worry.. but at the time said... "All kids develop differently and different paces.. she will catch up.." she started to talk around 15 months saying "mam, dad, hiya, bye" the basics. As parents we loved it..I mean who doesn't melt at young children talking?
But we started to notice how she would scream for everyone.. we thought it was maybe an attachment thing.. all kids go through that from time to time. No major alarm bells. Months drifted.. then she was a full blown walker.. but at 18 months old she would constantly toe walk.. we would joke saying she will be a ballerina one day.. Through the jokes there was worry.. The health visitor came.. hip checks, leg checks and checks on her feet was made.. the health visitor said she can go flat footed.. so it's not a ligament issue.. Her next words was it maybe a sensory thing.. she might like the feel of not having her full foot hit the floor when she walks.. This never crossed our mind beforehand. Then some other questions arose.. how was she sensory wise with other things.. Then my mind started to fire realising there was a few other things, we just thought maybe it's just how she is.. She hated things touching her legs.. clothes, blankets, shoes, socks... she would never eat food with her hands if it made a mess she would scream, throw the plate or dish.. we thought terrible two's was coming.. she would never be involved in messy play.. her older sister, Autumn who is 20 months older was forever in paint, gloop, play dough or sand.. esmé would scream like she was been tortured if we tried to involve her.
Normal? We thought she was maybe just a clean child..
The health visitor vanished.. we got along with life just adjusting to esmé.. not thinking that much of it.
Then she had her 2 year assessment by the health visitor.. she was 2 years and 7 months. The health visitor asked how things had been.. not much had changed.. other than she was aggressive.. very aggressive. Would hit, bite, nip, punch and head butt. She didn't care... she did it. But only now.. we had a new baby in the house. And the aggression sometimes was aimed at her new sister. She didn't like to go near her, wouldn't touch her.. would act repulsed and disgusted by her. We knew we needed help now because I could not risk her taking her aggression out on a newborn baby. But one day she did.. she hit her full blown in the face with a toy because she was crying.. she was shouting shut up and arghhhh. As parents we thought it was an adjustment thing. Maybe a jealousy thing.. having to divide my time? As parents we now started questioning ourselves.. Are we bad parents? Have we failed our children and they're only young? What did we do wrong with esmé what we didn't do with Autumn? The health visitor then got a behavior nurse to come visit.. She came weekly for 6 weeks.. gave us the whole timeout, reward chart, don't say no, change your voice, distraction, one on one time summons.. we tried all she said.. and none of it worked.. we was just noticing she was getting worse.
Then I started to get "on this day" notifications of Autumn at the same age.. seeing how different she was, how amazingly she spoke.. been able to have conversations, she would draw, paint, walk ect.. all the things esmé wasn't doing. We noticed her speech was really poor in comparison. We then noticed the circle... she would try to communicate, we would be confused or ask her to repeat the behaviours would creep out. Was it her speech causing all the issues? But surely.. speech doesn't affect your ability to have things on your legs.. or cause you to act irrational if touch paint.. surely not.
We carried on for months.. dealing with meltdowns, lashing out.. violence.. then the screaming started to start on a night.
Night terrors? Who knew? She couldn't tell us. By the age of 3 I would of expected her to tell me what the problem was. But at almost 4.. she still doesn't. Rang the health visitor again.. she said it will be a growth spurt.. ride it out.. went to Dr's.. they said developmental. We was now dealing with all these sensory issues in the day time.. the meltdowns.. now night times screaming kicking her arms and legs everywhere like she had been set on fire. Where was our sanity going to go now? Already struggling mentally of a shock pregnancy.. adjusting to a new child and a child with troubles was taking a huge impact. I used to cry in the morning at the thought of another day of kids.. cry on a night because I couldn't cope another night of no sleep, screaming and now 2 children been woken up to her screaming. Most parents get some time for catching up on a box set, reading a book or just enjoying the silence on an evening...
We wasn't... we had a screaming child who screamed the more she was touched. Screaming that would last sometimes 5 minutes but start as soon as you left the room again.. sometimes an hour.. Yes an hour. You'd think after an hour of screaming and kicking yourself around you'd be exhausted.. nope not esmé.. she would then sleep for half an hour and be at it again. We then started to realise it was only me who could calm her down. Dave couldn't go near her or she would get worse and worse. I then said enough is enough.. the health visitor needs to help! At this point she wasn't just coming to see esmé.. but also coming to see me. I had been put onto a higher dosage of antidepressants.. I was diagnosed with Postnatal Depression for the second after Emilie had been born. But this was worse... much worse. I was struggling.. mentally, emotionally and physically. It got to the point I refused to go out.. I wouldn't do the school run alone, wouldn't go out alone..the fear of judgement. Not only been 24 with 3 children.. but having one child who was not acting up terribly in public. The remarks had began, "oh that kid needs a smack, oh she let's that kid run rings.. the tutting, head shaking, staring.. some even laughing.. laughing because of me struggling with her.. or laughing to antagonise her.. I don't know. But it had got too much. I wouldn't answer the phone.. my marriage was taking impact because I was now the sole parent to esmé as she refused to have dave near her. He then thought she hated him.. made him feel awful as a parent.. arguing in tiredness and mental exhaustion. I snapped. I would break down, hurt myself in frustration as a relief of all the pent up upset, frustration and everything. I didn't want to be a parent no more... I didn't want to be a person no more. I wanted to just end it all.. Dave would of been a batter parent than me I was a wreck. Now having the health visitor listening to how I was feeling she started to notice the more she saw esmé that her behaviors wasn't "normal" for her age. She mentioned about autism.. and noticing traits of autism. She was delayed at speech, we had all the meltdowns and sensory behaviors. Now holding her ears at loud noises.. spinning in circles and sometimes humming. She referred a nursery nurse to come round. She helps with all aspects of children.. speech, sleep, behavior, bet wetting ect.. She mentioned to us about PECS (picture visual cards) and suggested they may be something to help esmé tell us what is wrong or what she wants/needs. Why had we never thought of this before? Something so simple but never thought of it. She printed me loads of pictures ect... we tried it. It was working! She was pointing to what she wanting... less meltdowns. Was this a solution? Then she started preschool.
School began and we thought that she would benefit from the interaction of children her own age.. Finally make friends other than Autumn. What could go wrong? Well.. the screaming on a night got worse.. bed wetting began.. wetting herself at school or outside began, meltdowns was worse. The school run... was hell on earth. I dreaded it. Even the night before I would dread the next day. Hoping she would wake up on a different side of the bed and be a happy girl.. a girl who wanted to go to school. She would throw herself on the floor, scream, hit, kick punch me.. you name it.. I was a human punch bag. But at this point in life I had a pram to push and tackle a child that was 2 stone and throwing every limb at me, aswell as trying to make sure we don't hit anyone else also on the school run! I used to have to throw her over my shoulder or put her on my shoulders and push a pram.. parents would stare and laugh. But this was becoming reality. I felt like a laughing stock.. a joke... someone the cliquey mums laughed about to make themselves feel better about themselves and their children. But did anyone ever ask me if there's a reason why she's like it? Does anyone now? No.
The upset and turmoil hit home next when seeing your child cling to you and scream hysterically or cry and throw herself on the floor because she had to go to shool was heartbreaking. I kept telling myself it will get better.. it will do her good to socialise. We got through the first term.. then the nursery nurse came back. She wanted to see what had been happening.. and if there was any improvements. If anything it had got worse. She had exhausted her resources and even then said that she wasn't qualified to make assumptions but she wanted me to see the GP regarding everything as she thought Esmé may be on the Autistic spectrum somewhere. She gave us information on other helpful organisations. One of which being Kids. Kids are a charity which help parents and children alike of disabilities and special needs. They was so helpful in guiding me on what to do, what to say to the GP and other organisations that could help.
We had her appointment with a lovely understanding Doctor. Who did a checklist of how she is as a child. She scored highly on the form of a possible autistic child. She sent off referals and told us to wait out for a response. So we did. Little did we know.. we got a form a week later to fill in. Something I thought was going to be a small tick sheet.. resorted in 15 A4 pieces of paper answering their questions. I read it all back and it hit me in the gutt realising that she is far from the average 3 year old. I started to finally realise it wasn't just terrible two's, bad parenting, night terrors or just a too clean child... there was something going on inside. Something I did not understand. Voiced all our concerns to school.. who also had noticed a few of the issues we was having. Only issues was.. at school she was and is an angel... she wasn't violent, aggressive, scream or shout... she was quiet, wouldn't speak, socialise, go to toilet, or eat anything other than a sandwich. But the second she left them grounds and still now a bomb would explode. She would lash out at everyone and thing around her. Autumn been target number one and still to this day is. She was conforming to the schools day to day routine and rules.. then come home and explode where she felt safe and loved. It hurts like hell. But suppose it's like anyone.. you go to work.. take it all in come home and load off to your other half ect.. but she can't tell us. So she would scream or be violent and abusive. We had to just leave her be. Been a child who doesn't play with toys ect.. we found she loved to watch lights. Another sensory flag. We saved up... and made her a sensory room. We gutted under the stairs.. harry Potter style and made her a room with lights, a busy board, black board and chalks and all little things we thought she might like. It was a hit! She loved to sit in there.. this now meant no stairs to climb and the fear of her throwing herself down.
Yes.. throw herself down them which she often does having a meltdown on stairs is scary! We really started to see how much she would calm down by just starting at the lights moving around the ceiling.. or the fish bobbing around in the bubbletube we had bought. Weeks passed and we started to really notice the sensory issues getting worse. The screaming on a night.. we now found it was because she didn't like the feeling of the sheet on her mattress, she also didn't like the feeling of a quilt on her legs. So what do you do for a child that wants to be naked with no sheets? Leave them be.. but then the fun started and it started to get cold.. how do you keep a child warm who doesn't want anything touching them? Well we are still trying to figure that one out! She would say it's noisy and hold her ears at loud noises.. she would become terrified and disorientated if a ambulance or motor bike when past. This was the flags really showing to us. Only eating cheese sandwiches and cherry tomatoes.. still refusing to get her hands or face dirty, not having top buttons done, meltdowns at the sock or tights seams under her toes, meltdowns if her jumper moves up her arm when she puts her coat on.. all little things we once thought was normal.
But then the icing started to layer on the cake... Kids became involved to help us to try and make school and home life easier.. they refered me onto a parenting course aimed at parents of children with special needs.. and been there I saw all these things we was dealing with on a day to day basis.. that it's not "normal" behaviors for her age.. and that I wasn't the only parent. We wasn't alone and it wasn't us been failed parents. It was nice to see other parents and hear their stories. They also sent us onto a sleep clinic to try and get some help with night times.. they tried so much offering so much advice. We exhausted all their options.. and we are now awaiting a paediatrician appointment to maybe get more answers... been rejected once.. second time lucky? Kids was now helping with school.. they setup a meeting which really made me realise what was going on at school.
We was told things I wish I hadn't heard.. but the meeting made things start to move. We was told she doesn't speak, she won't give eye contact, she had no friends.. this was the biggest kick in the heart. A 3 and half year old beautiful girl with no friends.. she would sit alone at a table and not even acknowledge anyone or thing around her. Why? Why was she like it? I didn't know. The school also said they was worried about her development.. from the sheets the school follows she was a year behind on all aspects of development for her age.. her speech was also very poor and she was on the school SENCO (special educational needs Co ordinator)'s radar. She was been recognised as something not been quite right. Speech and language was advised within school. We had already had a NHS speech assessment and been refered into the ASD speech team... but anything with autism in the title the waiting lists are ridiculously long. Approx 6 months for an appointment just for speech and almost 2 years for an appointment with the autism panel from accepted referal. We was accepted in February 2017.. so maybe a long wait ahead. We had the 6 weeks holidays then back to reality of school. Then I thought the school was failing their agreement. Been made to doubt myself... told she is running rings round me.. she knows what buttons to press.. she is a princess and gets her own way ect... she is a angel at school but hell out of school... they made me feel like it was me.. I was imagining it.. I started to get a pent-up upset inside thinking the school was now against me... thinking I'm making it up. Even though we now have to use ear defenders to get us around because she hates the sounds of the world.. resorted back to reins again to prevent her running away, running into roads.. running away also into bikes. She has been hit twice by bikes she has ran at for her lack of danger element. Now felt like I was battling against the school.
Not only was I battling the world outside... cliquey people and now the school. Was anyone on our side? Then the day arrived.. she had her speech assessment. The meeting after to explain the outcome was a shock to the system.
A language disorder and word and thought retraction... You know... that feeling when you're talking and you just completely forget what you was saying.. that feeling of just going blank.. the frustration trying to remember? Well this is part of what she had been diagnosed with. But it wasn't happening every none and then.. it was happening several times over and over in the space of an hour. No wonder my poor child was frustrated.. constantly going blank when she tried to speak... I'd be the same!
Also been told that she would 95% say she has sensory processing disorder. She has worked with a lot of children and adults alike like SPD and she mirrors most of their behaviors. She said we really need to look into a sensory assessment. The information she had given us was finally giving us answers. Then the bomb went off.. we found out that the NHS don't fund sensory integration assessments as part if a ASD panel assessment. So we was sat thinking well how do you get one.. then we saw it. Private. Banardos in hull offer a sensory assessment.. but at a cost.
We rang them up and got all the details on the phone. £500 for a full sensory assessment and diagnosis.. £500 to finally get the answers and help that she needs and deserves. Yes.. no one will touch you to help you without that label diagnosis.. which makes life even harder. I mean.. how are we supposed to help a child if the only way you can get the help she needs and deserves without that piece of paper saying what she does and doesn't have wrong? So now the long road of saving up.. if it's going to take saving up and paying it.. we will do what we have to do. One day I hope life can be easier for us all as parents and as a family. Hopes and dreams.
Been a parent of a potential special needs child is hard. Just wish that one day there will be more recognition.. more understanding and more awareness for children and adults alike with needs. Onwards and upwards we hope.
One thing is for sure.. I do love and adore my beautiful little butterfly... as the saying goes.. Autistic children are like a butterfly with a broken wing... both as beautiful.. just they need extra help to fly. Fly baby... fly.