Below are the supporting comments we submitted as part of the statementing process, which has led to a proposed statement of 32.5 hours one to one support per week for my son.
I am not presenting these as some sort of exemplar of good practice or a template or anything like that. Who knows how significant they really were. My son got the proposed hours because that is what his needs require, not because of something we wrote.
However, readers may find it useful to see what we wrote. I got help from others in how to write the supporting comments (some bits are a direct lift! Thanks- you know who you are). The more help you can get the better. I offer these comments as something that could possibly contribute to other parents’ battles to get support.
1. Parents Comments in support of request for Statutory Assessment
In support of the application for statutory assessment, we would like to share our concerns as B’s parents. Like all parents we have concerns about our child starting school, but with B we are extremely concerned about his move to primary school following his recent diagnosis of autism. Our older son is currently in Year 1 and we consequently have some experience of what is involved, the expectations and requirements of a child in Reception. It is very difficult indeed to see how B would cope in such a situation. Put simply, we feel B would not cope at all in Reception without particular focussed support.
B has delayed development in speech and language, both his own language skills and his understanding of others. He often talks out of context and uses learnt phrases to communicate his needs, rather than a natural conversation. He often does not understand what we say to him, and it can be very difficult to explain something to B as he will not understand simple instructions about what we are doing at home and where we are going. B will find it very difficult to understand what is expected of him in the classroom at school. He will not understand a teacher’s instructions and will need a lot of extra support if he is given a task to do. B still has some baby babble and will often talk nonsense. His words are often out of context and he can struggle to recall information. He can appear articulate, but frequently this is learned speech and phrases that lack context or comprehension. He is currently under the supervision of the speech and language service and they are visiting B regularly in nursery, are looking to offer some groups for over the summer period and will continue to work with B once he is at school.
B currently attends a private nursery three days a week, and although he can access this and can participate in some of the activities, there are many occasions where he presents an additional challenge to the nursery staff. He can get very frustrated because of his speech and language delay and this can lead to behavioural problems. He can also be challenging with his behaviour at home as he is easily frustrated. If he does not understand or cannot get his own way he will have an immediate meltdown and will scream and shriek. He has had recent incidents at home and nursery of kicking doors when he cannot get his own way. Many concessions have been made by nursery to accommodate B’s needs. All the staff carry PECS cards on their persons to reinforce appropriate behaviour, the structure of the day at nursery, and moving from one activity to another. The activities the children do in nursery have been rearranged around B’s needs (e.g. computer time), and we think it would be fair to say that B has received extra support from the nursery staff. Without extra support from the nursery staff B struggles to make sense of what is required of him at nursery, and cannot fully participate in nursery activities.
B has a very short attention span, and it can be difficult to engage him in a task. This can make everyday activities as a family very difficult, as things like eating out or going to the cinema are usually not possible with B as he will become too distressed and it can be very stressful for us all. B will struggle with activities at school because of his short attention span. He will need help to keep him focussed on activities, which is often the case at home, where he flits from one activity to another without real focus. B cannot sit still for any period of time. At home he rarely sits throughout any mealtime, instead he prefers to wander around and to come back to ‘pick’ at his food, or will just refuse to eat. At school he will need support at lunchtimes in order for him to be able to sit for long enough in order to eat. He will also need support for any sitting activities in the classroom, and for assemblies.
B responds well to adults but does not interact with other children. He does not talk to other children and does not join in their games and usually keeps his own company. At home he has developed a close relationship with his brother but does not interact with cousins and other children he knows of a similar age. He is not a withdrawn child, but as parents we worry about the effect this inability to ‘join in’ will have on him, particularly as friends are made in the early years of school and relationships formed.
When we think about B’s transition from nursery to school we are very concerned about how he will cope. Although we have told B that he will be starting school in September and he is aware of the school, we know that B does not understand what we are saying and has no concept of what school means. Given the support needs that B has we worry that without appropriate 1-2-1 support, and the chance to build a trusting relationship with a learning support assistant B will be a very lost little boy at school.
Below is a summary of our concerns and observations as parents:
- Delayed development in speech and language, both his own language skills and his understanding of others
- He will say ‘no’ to something when he does want it, and then will get very frustrated. As parents we know how to phrase things to him but this may cause problems with communication at school. He can be very contradictory.
- B finds it very difficult to physically sit down and sit still, he struggles with sitting for activities and rarely make it through a meal. He may not be able to do story time, assemblies or sitting for lunch without support. At nursery he likes to wander, often at mealtimes and at group time.
- Does not always respond to instruction, e.g. in order to move from one place to another can require physical intervention
- Speech- still displays some baby babble/nonsense/rambling, stock words and phrases, responds but doesn’t initiate conversation, words out of context, often can’t recall information
- B can have a very short attention span and has difficulty keeping focussed on tasks and is very boisterous
- Requires support with changes to his routine, if he has had an experience he will expect it to be the same in the future
- Can be non-responsive to his name and instructions
- Difficult to engage his attention
- Ongoing bowel problems, lack of interest in toilet training and may well be starting school in pull ups and will therefore require changing and cleaning several times a day while at school
- Poor eye contact
- Is very selective over what he chooses to engage with, and will need a lot of coaxing in order to participate in class
- Easily frustrated, immediate meltdown, screaming and shrieking, and can display disruptive behaviour when he is frustrated. He has had recent incidents at home and nursery of kicking doors when he cannot get his own way.
- Constantly makes a human ‘beatbox’ noise (stimming), and this can be a continuous noise
- Obsessive behaviours, particularly CD’s, DVD’s and computers. Is very easily distracted by these things.
- Sensory seeking-B habitually puts his hand down his nappy, likes touching other peoples arms, particularly elbows, he likes being barefoot and standing on things, he also puts things in his mouth that are non-food items and we have witnessed him putting staples and screws in his mouth that he has found at nursery, he can bite his nails
- Has a poor sense of danger, has been known to try and mess with electricity sockets. Will run off when outdoors, and won’t come back unless physically retrieved
- Limited imaginative play
- Difficulty socialising with others and would rather play alone, does not engage with other children
- B cannot dress/undress himself and needs someone to do this for him.
- Every day B is very distressed when dropped at nursery and has to be calmed down by nursery staff
2. Additional supporting parental comments
We have spent a great deal of time recently thinking about and planning for B starting school in September. B has had some recent ‘settling in sessions’ at school, and we have some further input from agencies which has made us even more acutely aware of the high level of support needs that B has, and the challenges he will face when he does start school.
B has a significant speech and language delay. This has recently been highlighted to us by a report from SALT, who has completed a formal assessment of B’s speech and language, and have scored him very low for his expressive and receptive language. We believe that B will need full support when he starts school in September 2011. B will require a person to support him at all times in the classroom to break down the verbal instructions given to the class, so that he can understand what is expected of him. B would not be able to comprehend a long instruction, or a continuous conversation and commentary to the class. Recently, B went into what will be his classroom after school one day so he could see it and explore before having to share this space with the other children. When we went in we met the teacher, and she spoke to B and started to tell him about the classroom environment, ‘This is where we hang our coats and bags, this is where the toilets are, this is where we sit in the mornings, these are the books etc’, as a continuous conversation to B, but I was fully aware that this is not an appropriate way to speak to B. He would not be listening to this as it is simply too much information for him to deal with at once. He would require one piece of information at a time, and then when he has had time to process this, you can move onto another thing. This reinforced to us how B will have great difficulty processing instructions from the teacher. He will need LSA support to sit with him and to explain things to him in an appropriate manner, be there to reinforce when he loses interest and use visual timetables to reinforce verbal instructions.
We know at home that B needs to be given one instruction at a time, and requires ‘processing time’ to take this in and then act on it. This week B had his medical assessment, as part of the statutory assessment process, and the paediatrician who assessed B had some difficulty in communicating with B. An example of an instruction he could not comprehend was ‘B come over here and show me how you can kick a ball’. B did not respond to this at all, we don’t think he was even aware that this was directed at him. B will need full support in the classroom in order to make sense of daily life in the classroom, to have someone who can break down instructions to him in simple step by step stages, and provide a continuous prompt and reminder that he has a task to do. Without this we feel that B will have difficulty accessing the curriculum.
B’s speech delay also means that he has great difficulty in expressing himself. He talks through ‘learnt phrases’ rather than free flowing conversational speech. Although B is showing progress with this, his speech is still significantly behind that of his peers. When B is at school and meeting new people he is likely to greet them with ‘What’s your name?’, ‘What’s your favourite ice cream’ or tell them about a rollercoaster he likes. B has now met his new class teacher several times and every time he greets her with ‘What’s your name’ even though he does know her name and will answer correctly when questioned on it. B will need full support, from someone who is able to work with B, and to understand the phrases he speaks in. If asked a question B struggles to answer and he can get very frustrated if he cannot make himself understood. This is when his behaviour can deteriorate and he can have outbursts and ‘tantrums’.
B can still display a short attention span, and will require prompting and keeping on task. B has very poor self help skills, he cannot dress or undress himself properly yet, he cannot put on shoes and he cannot organise himself or remember to pick up his bag or coat. B will require full support with all of these things.
B is also presently not toilet trained: he has ongoing bowel problems and very soft motions 3 or 4 times a day which combined with the delayed speech and lack of self awareness have made toilet training virtually impossible to date, despite several aborted attempts. We are hoping to get some further support with this, and investigations into the bowel problems so that we can start to toilet train B with some success. B has simply not been ready up till now. He is very young for his years, and is still not yet age 4. If in September B has not made sufficient progress, he will require full support with all aspects of toileting. Simply sending him into the toilets with the rest of the class with the instruction ‘go to the toilet and wash your hands’ will result in very clean hands and no toileting. B will require someone who can give him very clear and specific instructions with this task, and assist him in the bathroom. B does not show any signs of knowing when he needs, or has passed, a motion. If questioned he will usually deny it, despite it usually being obvious that he has. B is still in ‘pull-ups’ and will require a member of staff to check him frequently, and to change and clean him up, and help him change into clean pull-ups or pants in the future. B has no self help skills whatsoever with this process and is unable to wipe his bottom or clean himself.
B still has great difficulty in approaching children and interacting with them. We feel that B will need full time support in the classroom to help him with this. Given that Autism is a social communication disability, B will need help and support to show him what to say to other children, how to share equipment and toys and also how to play with others. We feel very strongly that B is supported at break time and lunchtime as he will not learn the joy of playing with friends at school naturally. This is a skill he is going to require a lot of time and support to develop.
B will need full support in order to know how to behave appropriately in school. B is a very sensory child, and loves touching other people’s skin, even people he does not know very well. He enjoys squeezing arms, elbows and moles and can be quite rough in his efforts to get to the skin of others. B will think nothing of going up to a stranger and squeezing their arms if the mood takes him. He can also be quite headstrong, and will need support to show him the appropriate behaviour in school. B only attended a pre-school for a number of weeks, and this was before Christmas 2010, so he has not had the experience of being based in a school based nursery and mixing with many staff or many other children. B has attended a small private nursery with 4 staff and approximately 20 children on its busy days.
B also puts things in his mouth that are not edible and he does not understand that this could be dangerous to him or make him ill. B also has a nut allergy so will need to be supervised at lunchtimes to ensure he does not eat food from another child’s lunchbox, that could possibly contain nuts.
B will require support at lunchtime to ensure he sits, eats and does not present a danger to himself. At a recent settling in session at school, I went with B and had lunch in the school dinner hall. B was very interested in the food the other children had, and when he preferred someone else’s crisps to his own he wanted to go over to them and take them. As I was with B I was able to prevent him from doing this, but he could present a danger to himself as he does not understand he has a nut allergy, and does not understand that he cannot put things into his mouth.
At present, B needs to learn to manage his own behaviour, learn to listen patiently, take turns and begin to engage in more meaningful dialogues with others. Though he can appear to be very well developed in some aspects, he falls short in terms of his social and emotional development. He is uncomfortable learning through the conventional methods of sitting down, listening, sharing and playing games with others. He simply cannot sit down for prolonged periods.
B has significant developmental delay compared to his peers. Although he is nearly 4 years old, in many ways he is like a 2 yr old. He cannot cope with his emotions and not getting his own way, immediately and every time, and this often results in a screaming ‘toddler tantrum’. It is very difficult to explain to B that he can’t have something or he has to wait and have it later. He has no comprehension of time, and a ‘no’ to something for B, he interprets as ‘no’ forever, and this results in immediate meltdown. At home, as his parents, we do sometimes give in to his demands or try to negotiate but sometimes for the sake of our own sanity it is not worth a ‘battle’ over whether he has an ice-lolly at that time of day or not. B is going to find coping with new rules, and not getting his own way every time in the classroom very stressful and this is when his behaviour will deteriorate. He will need an LSA with him to teach him appropriate behaviour and to be on hand when he is having a tantrum, cannot cope with something or just simply does not like something.
B thrives on one to one attention. He likes adults, as he needs people who can give him the attention and praise he enjoys, and play alongside him in a way that he can understand. He is tactile, affectionate and gregarious in the company of adults. He has formed close bonds with several of the adults who have worked with him and they, in turn, have reported on how rewarding an experience working with him can be. With children, he becomes more solitary. Their lack of predictability excludes him from becoming involved in their play.
As parents, we feel B needs to be educated in an environment that is flexible to his needs and positively embraces his differences and difficulties. He needs an environment that nurtures him, understands him, understands how he learns and is willing to make reasonable adjustments. B has the potential to flourish in the right kind of supportive environment. We feel that with sufficient one to one support, B could thrive in a mainstream school. He should be in an environment which is as normal as possible in terms of behaviour and social interaction. He should be able to emulate, in due course, the behaviour of his peers in a learnt fashion. In order to achieve this, he will need constant guidance and input from the people around him. We believe he will need fully qualified and experienced one to one support as he starts education.
Thank you so much for this post. My son is having a multi disciplinary team assessment early next year but I have been told by the SENCO and Speech Therapist that we are unlikely to get a statement as he is not severe enough. My sons sounds similar to B in many ways so this has given me hope and I will push for a statement regardless. I know we are a year away but my heart sinks when I think of my son in school without support. I wish B the best of luck in school.
I would also like to add my thanks for posting this – it will be particularly helpful when we start the statement process early next year (my son is due to start school in Sept 2012). Like Louise, we have also been told our son won’t get a statement (by paediatrician and S<) and have been advised by them not to bother trying! My son also sounds remarkably similar to B.
I’ve read your post today on Telegraph and found your blog here. Thanks for this blog and it will certainly increase awareness and benefit many many readers.
Hello, I have a severely autistic son of 19 and I came across your post on the Telegraph today. We had to get a lawyer to supervise our son’s Statement, articularly when he had to move to a residential placement. The fight to get him into an adult placement was pretty dreadful as well. The more people know and understand about Autism the better both our son’s lives will be. Good luck and thank you.
Thank you. I hear a lot of stories about similar fights with local authorities. I wish you well.
Autism is medical diease, it’s treatable, my son is on GAPS diet, and i started to give him MMS(Master mineral solution by jim humble) few days ago, don’t listen to FDA or ACA, they don’t want us to be healthy, i just ordered Quinton hypertonic(sea water)today, i truely believe he will be recovered within a year(maybe few month), please watch this video http://www.autismone.org/content/38-children-recovered-20-months-mms-0
and there’s more to learn http://www.mmsautism.com
i tried so many things over the time, i think this is the best protocol to bring our kids health back!
Hi, if anyone would learn more about autism in toddlers, small children – symptoms as well as adopting behaviour to enjoy the relastionship with the autistic child, I recommend ‘Autism in toddlers and small children’ http://www.amazon.co.uk/Autism-Toddlers-Small-Children-ebook/dp/B00COBUYGI/ref=sr_1_6?ie=UTF8&qid=1368131708&sr=8-6&keywords=autism+in+toddlers
It is a new position, but definitely worth your attention.