ASD

My journey so far with big monkey...

Pregnancy and Birth

I had a normal pregnancy and worked right up until my due date and big monkey was fashionably late. Big monkey was born at the end of August 2012. It was the best day of my life. I thought I was queen of the world. I remember it being an evening and having skin to skin time, it was me and her as everyone else had gone home. The midwifes took us up to the ward and I just kept her in my arms for the whole night. She was perfect and over the first few days I watched her eyelashes grow. I was officially a parent, responsible for a mini human.

Becoming A Mum

I went home the next day and my mum came to live with us for a couple of weeks to help me. The midwife came to visit everyday and noticed that big monkey had jaundice. She though that she would be alright if we put big monkey by the window and get her outside in the sunlight. The jaundice was very high one day and we had to go to the hospital to have a heal test. It was such a horrible experience as she just cried and I was really worried about her. We were at the hospital for a few hours and thank goodness we were back home that night.

1st Year

I loved my first year with her, we did so much together and went to every baby group possible. Big monkey had terrible colic when she was really little. As she got older we had to give her children's Movicol to help her with her with her bowel movements. Big monkey loved all of her toys and showed a special intertest in musical instruments. With regards to moving, she rolled early and with crawling she was just under a year.

Childminder

When big monkey was just under a year old, I went back to work. Big monkey went to an amazing childminder two times a week, which was near where I worked. Each term we would get a detailed update of how big monkey was doing. She didn't really integrate with the other children and preferred adult company. Just before she was two, the childminder spoke to me about how he was concerned about big monkey not giving eye contact a lot of the time.

Speech

Big monkeys speech, if you didn't know her, you wouldn't have been able to understand her. She used to get very frustrated when people didn't understand her and sometimes she would over use gestures. Between the ages of one and four she used to get her hands and put them either side of an adults cheek and pull their face to look at hers when she wanted to say something. When I voiced this in her two year old check, they kept saying how young she is because she is an august born child. In my gut I knew something was wrong.

From three years old we began to notice a stammer.

Nursery

When big monkey started nursery her key workers spoke to me about her speech and her pronunciations of some sounds. They also noticed the stammer and told us to go to the Speech and Language walk in center. They saw us and we got referred straight away. We saw a stammer specialist and they also looked at her speech sounds and if she was hitting the right sounds for her age. The stammer specialist said that her vocabulary was amazing for someone her age and that we needed to work on her sentence structure. We also went on various programs for her speech. The stammer specialist was amazing and big monkey still sees her now!!!

At nursery, big monkey needed lots of reassurance and found leaving mummy or daddy quite hard. She tended to stick to one or two children and preferred boys company to girls. Big monkey would often wear shorts whatever the weather. The nursery spoke to me about how much she seeks adults and prefers to have a conversation with them versus one of her peers. They told me she asks lots of questions and gets very anxious.

Starting School

When starting school I knew something wasn't right. The class teacher was amazing and really worked on big monkey's social side and her stammer due to me initiating it. This teacher did above and beyond for big monkey and they still have a bond now days when they see each other.

Shorts was a thing for big monkey. On the schools uniform there was nothing for girls wearing shorts. I spoke to the headteacher about this and got the uniform list changed as I had to roll big monkey's trousers up everyday so she could wear shorts. Wearing shorts definitely made big monkey's experience in Reception better as she felt more comfortable.

I asked for a meeting with the SENCO and spoke to her about her stammer and my worries and she told me that she is still very young and there is nothing I need to worry about. I was beginning to get frustrated as I had a gut feeling that big monkey needed something, but couldn't figure out what it was just yet.

Academics I wasn't worried about, but at the time the teacher said she is very good but her writing was what she spoke so her sounds were linked to her speech and language.

When having playdates I noticed that she wouldn't really play and just follow the adults around the house. She needed to know right from the start of the playdate if she was having dinner and what it was. I tried to do a few spontaneous playdates but they were not successful.

I was beginning to notice that if there was a change of plans in the day she would need to know well in advance because otherwise it would give her stress and she would cry. When playing with anything she began to set things up thinking she will play with it for a long time and in seconds she will lose interest. She wouldn't tidy it up and just leave it for it never to be returned to.

Key Stage One

In year one, big monkey had a lot of change with different teachers and teaching assistance. I do believe this played a vital part in her anxiety and adults not really taking the time to understand her. I remember having a meeting with one of the teachers and telling her how upset I was with how she greeted the children at the beginning of the day. I found her very cold. My husband to this day keeps reminding me of the conversation and how uncomfortable he felt. This was a turning point for me that I knew that if my daughters voice wasn't going to be heard I had to voice it.

On various occasions over the two years I tried to speak to the SENCO but she wasn't listening and even told me that her speech wasn't an issue and wanted to remove her from the program. I just felt like I was hitting a brick wall and that I had Munchhausen By Proxy.

I was beginning to notice her sensory needs and anxiety levels increasing, resulting in escalations of behaviour. Big monkey began to put everything in rows and when she needed to make sense of something she will make a mess in her room and then try and tidy it up but if it wasn't the way she envisaged she would get frustrated and just leave it.

To encourage social activities big monkey signed up to street dance, swimming and football. My husband and I wanted her to get a sense of teamwork and that just because you didn't (for example) score a goal your team still won because everyone helped to score that goal.

Near the end of year two I had a meeting with the junior SENCO and the headteacher of the infants. We were all in agreement that there is something there but we are not sure what. It was a really positive meeting and everyone agreed in the first two weeks of year three we would have a meeting.

Year Three

This was the turning point year!!!

I vividly remember being in the SENCO office having a very nice meeting and both in agreement that there is something there. At the end of the meeting I was getting frustrated because I knew everything the SENCO was saying so I said to her, "what do you think it is?" She thought she had signs of autism. When she told me this I cried, not because I was angry, because I felt relieved that I didn't have Munchhausen By Proxy and people were thinking what I was thinking. From this meeting I signed the paper work and began the investigation and the real journey of helping big monkey.

People could see she was very anxious and she was introduced to having time out of the classroom when things were just a bit much for her. At lunchtimes and playtimes she was also supported by her having a room she could go to if she wanted some quiet time. The staff were beginning to see in certain situations she finds it very overwhelming. Some children were taking advantage of her social delay and it was tough for her.

Diagnosis

At the end of year three, big monkey had a school phycologist come and observe her. She told me of the struggles she faces at lunch and break times and how she doesn't have much confidence in her work at school. She diagnosed her with ASD, anxiety and depression. This was very hard for me to take in. The lady gave me lots of reading material and I was beginning to piece it altogether.

A few weeks later I got a letter from CAMS saying that there is such a long waiting list and would we be interested in Healios doing the assessment and we could get the diagnosis much quicker. We agreed and the assessment took place online. It was a long process involving my husband, big monkey and me. A week later I had a phone call, it was on a Friday and I was cooking dinner. I got told she has ASD and that she is high functioning asparagus. When we had our follow up meeting it opened lots of doors for support and I began to get very proactive.

Year Four

This was the year when things properly started to happen for Rosie. She had some counselling, play therapy and anxiety work. The SENCO also got in touch with the local autistic unit so they could do some work with big monkey.

Home life was getting harder because big monkey was bottling it all up. Sometimes she would come home wet because she didn't like using the toilet as it echoed and the girls would bang on the door. She would come home and be angry, wanting to hit out and cry. We worked hard on making a calm space for her that she can sit and chill in, punch a punch bag, listen to music and use her strategies that she has been working on.

At the beginning of the year there was so much to offer for big monkey, but as the year went on, it all disappeared. They wanted to see how big monkey would cope now she has done all of the things above. Unfortunately this was not successful and she didn't use what she had learnt and needed more support. I was told there was nothing else as there is others that need help too. That didn't go down very well and I kept on pushing and pushing. Eventually we got more support.

At the end of the year we had a meeting with the SENCO and teacher. One of big monkeys targets was a Literacy target on how to describe other people's emotions. I flagged this up as she can't even describe her own and it was a totally unrealistic target. This made me feel that her class teacher actually doesn't really know her.

The Now

Big monkey has an amazing teacher and teaching assistant that actually is understanding her needs and helping with certain situations she faces.

She still finds school really tough. At the moment we struggle sometimes to get her into school. With the help of her teachers and the SENCO we are working on different ways to get her in. Sometimes she sees the family support worker, putty club, sensory circuits or goes for a walk around the field.

Her anxiety has hit a record high and she needs to write lists for everything. I have noticed she sucks her top a lot and needs a fiddle toy for most of the day. Her nails are being picked more often than usual. If there is a big crowd, we have to wait until it has disappeared. Transitions often cause behaviour. We are still in touch with the anxiety lady from the group who has offered lots of support particularly to do with transitions.

School have been working on her zone of regulations and she has a lanyard now to help her at school and at home. She will be working with a teacher to talk about emotions and using them in real life social situations.

Toilets are still an issue at school and still comes home wet but this is becoming less often.

She uses ear defenders now when she is in a big room or loud room. Although she is finding it embarrassing wearing them. I have found ones that look like headphones and waiting for them to be delivered. Maybe that may help?

She hates changes and if there is a surprise happening for herself or anyone we need to tell her in advance and that normally deescalates behaviour.

Big monkey doesn't like it when she doesn't have people's attention and often behaviour escalates if her sister or someone else in her family is getting the attention. When this happens she will take their toys away, say nasty words or try to hurt that person. We have applied for Early Help and have currently had an anxiety assessment. I will keep you updated on what will happen next.

What I Have Learnt On My Journey So Far

• Trust your mummy instincts

• You have to keep fighting and make your voice heard

• Have a paper trail of everything

• Build a relationship with your SENCO

• Ask for help

• Be honest about everything

• Involve family members and educate them on what is going on

• It is an ongoing process

• Building a tool kit with your child on different strategies to use for different situations

• Self care so you don't burn out