I am sure most people were like me in that they have heard the words autism or Autistic Spectrum Disorder (ASD) and maybe the more recent one of Autistic Spectrum Condition (ASC)…refer back to the title of the blog to see where I am going with ASC; but either wasn’t fully sure what it meant or had in their mind a lot of stereotypical traits that a person with this condition would have. After his diagnosis I had no idea as to what it would mean for Joseph or for those around him; I could simply see how things were there and then.
2012 as I saw it, was a new phase of our lives, in which I hoped that I would accept Joseph’s diagnosis and then simply get on with what I needed to do to support him. Ryegate had offered us a place in their group ‘Footsteps’ which was a playgroup for children who had been diagnosed with ASD. Only 6 children from Sheffield each term were offered a place at the group. My initial thought was that I didn’t want him to part of a group specifically for children with special needs, but it turned out to be a pivotal time for us all. I believe now that we were offered that place as the professionals there could see that we were committed to Joseph’s development and would do whatever it took to ensure he progressed. It was staffed by people from the Autism Communication Team and the Speech & Language Therapy department. He attended 2 mornings a week for 6 months and during this period, I was working evening and night shifts which meant functioning on even less sleep than usual to get him to and from the other side of Sheffield. I also relied heavily on my parents on some of these days and without them it wouldn’t have been possible. I knew that he was extremely lucky to be in this group and there was no way it wasn’t going to happen. Joseph had already been introduced to a new communication method (PECS) which used pictures as a means of helping him to articulate what he wanted and we began to build on this. We used visual timetables to enable him to understand his week ahead and other strategies that would help him and us all, to function on a daily basis.
It was also a time for trying to choose a school for Joseph and unfortunately without a Statement of Special Educational Needs, that was a minefield to say the least. We had recently moved back to Rotherham and there were politics involved when it came to an NHS service in Sheffield providing support to a family that lived in Rotherham. Educationally it was just as complicated, as the team at Footsteps could only support him further if Joseph had a place in a Sheffield school.
We visited a number of schools and took advice from the professionals that had worked with him; don’t choose anything too big for him, nothing too small, nothing too visually stimulating, make sure it’s stimulating enough. My head was all over the place and to capture some of those moments and to take us through to the second part of the year, it’s only fitting that I share with you some of the diary entries I wrote at the time.
Thursday 19th January 2012
Not sure whether we have taken a step forward today. Am I the only one who finds it funny to find a turd on a bedroom carpet? It’s constantly on my mind that Joseph will soon be 4 yet he isn’t toilet trained. Joseph has always had this thing that when he does want to fill his nappy, he goes into a quiet corner or another room and shuts the door. Today I’m filling the bath and he had already started undressing himself (which I thought was in readiness of the impending dunking) when I notice that he has closed his bedroom door. I wasn’t expecting what was on the other side of the door but when I opened it, I was faced with 3 small perfectly formed turds sitting staring at me on the carpet and Joseph saying ‘Poo.’ How could I not laugh? I tried in my best mum voice to tell him that poos were for the toilet and swiftly scooped the offending parcels up and deposited them in the toilet. He seemed quite taken with Mummy scooping and flushing. As I am trying to be in a positive frame of mind, I will take the following from this evening’s scooping activity –
- The fact Joseph didn’t want to have the turd in his pull ups might be a sign he is ready to ditch them in favour of pants.
- Identifying said turd as a poo shows me that he does actually listen to me occasionally and knows what the smelly brown things are.
- An interest in flushing turds surely must be a sign of something?
Of course I could always dismiss all of this and actually be rather sad at the thought that my son has now taken a shine to making brown stains on our rented house’s carpet!
Tuesday 24th January
I was fortunate enough to gain a place on a workshop on autism that Ryegate were running today. I was surprised at how much I already knew about autism and felt very proud of my son and his achievements. Listening to other parents, I feel that Joseph seems to be progressing more than others. I am more than aware of the areas we need to work on but I also want to concentrate on his strengths and he has so many.
It’s the start of his second full week at Footsteps and already he seems be making huge steps in his development. Today I was told by the staff that he is doing better with ‘moving on’ and sitting for longer periods. I feel encouraged by these achievements and hope that by September when he starts school, he won’t stick out like a sore thumb and will know what’s expected of him in his new environment.
Thursday 26th January
It’s amazing how all of a sudden a name or a diagnosis can change your outlook considerably. I find myself appreciating the more simple feats in Joseph’s life. Today we left his nursery and he was bounding across the car park and fell. It upset Joseph and he rubbed his leg, looked at me and said ‘sore leg’. To any other parent, that moment would simply pass them by but to me it was one of those gratifying moments. Joseph rarely shows emotion after having a bump. We always put it down to him being tough but it’s as if he is immune to the pain. Today it was like someone flicked a switch and I stood there and cried whilst trying to comfort him. The fact he correctly identified what had happened when telling me ‘sore knee’ was a bonus. I often have that overwhelming feeling of pride and emotion these days.
I’m sat here crying at One Born Every Minute. It’s not unusual for me to cry at TV programmes but today I’m watching a woman give birth, who suffered head injuries after a road traffic collision. She is happy and content with her life and looking forward to the new life that she will soon bring into this world. Her story is one of courage and adversity and you cannot help but have admiration for this woman. The reason I mention it is I am having one of those moments where I feel frightened for Joseph’s future. Will he have someone to love him and will he be able to love in return? Will he be capable of fathering a child and will he be able to offer that child the guidance and support that it will ultimately need? It’s not the be all and end all but once again something we all take for granted when we have children. I often find myself crying and grieving for the life that Joseph may never have. I so desperately want to be the Mum who is accepting of Joseph’s diagnosis yet sometimes that seems so far off.
Thursday 2nd February
Joseph has only been at his Footsteps group for 3 weeks and I am immensely proud of him. I want him to acquire all the skills that will enable him to fit into school as easily as possible. A few of things Joseph has difficulty with is ‘moving on’ and staying sat down whether it be for meals or a planned activity. The wonderful people at Ryegate work with Joseph and implement proven strategies to develop these skills. Already he has made a lot of improvement in these areas and to do it in such a short period is great news. Even when Joseph hasn’t had a particularly great session there they have this amazing way of making it sound not so bad. I always want Joseph to be surrounded by such positive people as it’s infectious. They have this way of making everything sound achievable and I come away buzzing. If only I could get it on prescription!
He’s also had two nights now where he has slept until 6.40 am. Is he going to make it three nights in a row and give his Mummy a much deserved rest? Or will it be a case of regardless of what time Joseph wakes up I’ll be awake at 6am anyhow??
Saturday 18th February
Today I looked at Joseph and his beautiful animated face and I had tears rolling down my face. I wonder what is going through his muddled up mind and what would Joseph be like without autism. Any parent who says they wouldn’t have it any other way, can’t be telling the truth. Why wouldn’t anyone want normal? Will I always have those thoughts of what life would have been like for me and Joseph without all this? I would give anything not to be having this experience. I want what all my friends have with their children. Is that so wrong?
The autism booklet they gave me after diagnosis describes the situation well. You and your friends are planning a trip to Paris. You’re looking forward to the journey, being there and to be able to talk about the holiday for years to come. Shortly before you’re due to go, someone tells you that you’re not going to Paris with everyone else. You won’t share the journey, the holiday and the chats after. You’re going to Amsterdam. But you don’t want to go to Amsterdam because everyone else you know is going to Paris. But actually when you get to Amsterdam you realise it’s just as beautiful place as Paris. It’s just different.
Well, unsurprisingly I still want to go to Paris. I’m not interested in going to Amsterdam alone and I certainly don’t want to go anywhere different.
Tuesday 28th February
Today I met with the Head of Speech & Language Therapy at Ryegate. It was meant to be an informal catch up but felt more like a relaxed counselling session. We discussed how I felt and how I perceived Joseph’s progress. I told her about my vision and my acceptance of his diagnosis. I’m not trying to fight against it but neither am I willing to just accept that this is the way it is forever. I have read a few articles recently that all emphasise the same point. Early intervention is the key to helping Joseph fit in with ‘normal’ life and understand the social aspect of life in general. He is young enough to be able to learn this and I already see so much progress since he has been attending Footsteps. After speaking to her, I immediately felt a huge boost and that I was receiving a pat on the back for my attitude. She even called me articulate. I joked that someone from Rotherham had never been labelled that before. Still, a huge compliment to be called articulate from the Head of Speech and Language Therapy!!
Tuesday 6th March
Joseph’s Footsteps has been cancelled today so we were lucky enough to spend some bonus time together. It’s such a lovely day and we’ve been to Clifton Park. When we arrived, the main car park was closed so we had to pull away. Immediately, Joseph became upset as he thought we were no longer going to the park. He is very aware of his surroundings and situations like this are always difficult. I reassured him that we were still going to the park but just had to park the car somewhere else, not actually knowing whether he understood me. I knew we would be parking further away and wondered how it would unfold as getting him to walk with me is always a struggle. And then when the time comes to leave, it’s further for me to pick him up when he doesn’t want to come and he is so heavy. After parking on the main road, I told him that he had to stay with Mummy and hold my hand. Surprisingly enough he did and when we were walking in the park and he was going off in the wrong direction he listened to me and came back. When it was time to go (admittedly a bribe of Maccy D’s was offered) he walked with me all the way back to the car. I am absolutely astounded as to how well he did. Every time I do things like this with Joseph, it mostly ends in tears. Usually on both our parts, so to experience this today, well it feels fantastic. I am sure we will have not seen the end of him throwing strops in public places and not following instructions, but today has given me so much hope. He can do it as long as I don’t give in.
Tuesday 20th March
Well my little boy is now 4. Hard to believe really but equally so much has happened in the last 4 years. We had a great day out yesterday at Sundown Adventureland. It’s when we do things like that I can see what an improvement he has made. It was so much easier to get him to move from one place to another and to get him to sit and eat. I do think he has become a birthday junkie though as the celebrations have been going on for that long. He now randomly sings Happy Birthday to himself!
I decided to read through what I had already written given the fact I feel a lot stronger mentally. Maybe not the greatest idea as I am now sat here sobbing at how things have been, still is and what will come in the future. I would love to be a woman who people can look to for inspiration but at the moment I feel I’m too up and down to be anything to anyone other than functional.
Thursday 19th April
I’m watching the programme Louis Theroux:Extreme Love. It’s about children with autism in America and a specialist school they attend. I was hoping it would be a school that turns these children’s lives around. Children who may have been written off because of their label, yet with intense learning they have managed to overcome the odds; it’s not. I’m watching a whole group of kids who look odd, behave odd, and talk in an odd manner. I am watching Louis giving high fives to the kids, the teenagers clapping along to ‘If you’re happy and you know it’ and I am listening to a Mum saying ‘God only puts upon you what you can cope with’ It seems like a mirror of my life in so many respects and I resent the programme just because these are the things that we say and do. These children cannot seem to cope with life and it breaks my heart. Is this what my baby boy will turn out like? The truth is, none of us know how our kids will turn out but I watch these kind of things and it makes me want to just switch it off and scream. Is this how other people see Joseph? I have no idea why I am continuing watching it. I feel like I am testing my own mental strength and if I turn it off it’s a reflection of my own coping mechanism. I wonder how many more people will ask me whether I watched this programme.
Wednesday 2nd May
There are days when I feel anything is achievable and with my help Joseph will grow up into a bright, balanced young man. Then there are days when I feel overwhelmed with all the help and support that Joseph will constantly need for the rest of his life. If only I had a crystal ball and maybe I wouldn’t worry as much. I wake up in a morning and hate the life Joseph and I are faced with. I am angry for him and angry for me. Joseph wasn’t destined to be autistic. He was going to be our intelligent sporting child. Instead, I am having daily conversations with Speech Therapists and Support Teachers and my head is awash with various groups who promise to help. National Autistic Society, Parent Participation Group, Stepping Stones. Various terminologies such as School Action, School Action Plus, Statement of Special Educational Needs. I don’t want free nappies, extra Tax Credits, Disability Living Allowance or a grant from the Social Fund. I just want my perfect healthy boy and that holiday to Paris. I want to make lists and I know I am on the verge of losing it when I feel the need to make lists. The problem is, I can’t make a list because there are that many things buzzing around in my head, I can’t extract the important things. I have a deadline of 8th May to get the appeal in for Joseph’s school and I just can’t buckle down to finish it. I really wish it would all just piss off and go away.
Thursday 24th May
I’ve opened a copy of a report prepared by the Support Teacher at Ryegate to submit towards his Statutory Assessment in order that we can get a Statement of Special Educational Needs. This hopefully will enable us to get the help Joseph requires at school. I can honestly say that for each day I feel that I am dealing with this whole issue, there are three days that I’m not. I don’t like to think that I have my head in the sand or that I am unaware of the areas that Joseph needs help with but reading that report really did upset me. She referred to Joseph as clumsy and that his gross and fine motor skills were poor. Can you imagine reading your child’s school report and saying his handwriting is messy or that he isn’t good at maths? Well quadruple that and you might have a clue how I was feeling at the time.
Tuesday 5th June
Joseph and I went to the supermarket today and to Meadowhall. I was very proud of how he behaved and the improvement he showed. These type of trips have always been a major headache if Joseph decided he wasn’t going to play ball. He walked with me and came to me when I shouted him. It was one of those days that I will feel proud and grateful of such an improvement.
Tuesday 12th June
Today was Joseph’s first visit to his allocated school and I was as nervous as hell. I didn’t want to pick him up and hear a load of negatives; I was convinced that was going to happen. I parked up at our friend Pauline’s house as I thought it would be easier. Unfortunately that was a bad call on my part as Joseph became upset when we didn’t go to her house. I eventually managed to get him up the drive and into school. The teacher was rather loud when she greeted Joseph. Too cheery for my liking too! At this point Joseph shoved his fingers in his ears and stood behind me. It wasn’t long before he decided that he would be missing out on too much by staying there and wandered off to see what he could find. I had a quick chat with the teacher and then said goodbye to him. He told me “bye see you later Mummy.” When I returned 3 hours later, my heart was in my mouth wondering what might have happened during his time there. I had a brief chat with some other parents and then was told by a teacher that they were just finishing story time. I was worried that Joseph would be the only one not sat on the carpet listening but to my amazement he was sat there with the rest of his class. I was so proud but in floods of tears when she went on to say what a great morning they’d had and that they were very impressed with his musical ability and rhythm.
I’m now left wondering whether I am doing the right thing appealing to go to a Sheffield school but have decided that I am going to see it through. I have put too much work into preparing everything to let it go now.
Sunday 17th June
Despite everything that has gone before, I have made the decision that I am going to contact the school in the morning and tell them regardless of the outcome of the appeal, we are going to accept his place there. I want to regain control of the whole situation and not wait for someone to tell me Joseph’s fate. I do believe that after the visits we’ve both had, they will do their very best by Joseph.
This was only the first part of the year, yet so much happened in that time alone. It was inevitable that the second part would lead to changes that would have a lasting impact on us both.