Anna Kennedy Online – Autism Awareness Charity
Empowering Parents: Unveiling Challenges in Personal Budgets for Children with SEND

Empowering Parents: Unveiling Challenges in Personal Budgets for Children with SEND

Empowering Parents: Unveiling Challenges in Personal Budgets for Children with SEND

 

A recent report by the Local Government and Social Care Ombudsman sheds light on a pervasive issue concerning parents of children with special educational needs and disabilities (SEND). The central concern revolves around the limited autonomy afforded to these parents in choosing how their children receive support. The crux of the matter, as identified by the Ombudsman, lies in councils’ incomplete grasp of the personal budget process.

 

A personal budget, a financial allocation designated by the council, is intended to facilitate the implementation of provisions outlined in an Education, Health and Care (EHC) plan. This financial flexibility empowers parents to actively participate in arranging the necessary support for their children. However, the Ombudsman’s report uncovers a spectrum of challenges, from administrative lapses causing delays in payments to more profound issues, such as councils being oblivious to the process.

 

The report illuminates instances where councils failed to recognise parental requests for funding as tantamount to a request for a personal budget. Furthermore, it underscores a widespread lack of information available to parents regarding the existence of personal budgets as a viable option. The Ombudsman asserts that councils must consider individual circumstances when evaluating requests for personal budgets, emphasising the need for a personalised approach.

 

One glaring concern highlighted in the report is the absence of clear explanations for decisions and a failure to provide guidance on the right to review. The Ombudsman advocates for adherence to “good administrative practice,” urging councils to elucidate their decisions and inform parents about the review process when communicating decisions on personal budgets or direct payments.

 

Delays in considering parental requests emerge as a recurrent issue, amplifying financial strain on parents and caregivers awaiting decisions. The Ombudsman underscores the systemic problems within the system, compounded by a lack of comprehension among those in authority. Paul Najsarek, the Local Government and Social Care Ombudsman, contends that parents should act as equal partners with councils in determining support needs and funding, calling for urgent reforms to address the evident crisis in the system. Najsarek’s plea extends to government proposals and the need for expeditious progress in implementing pledged reforms outlined in this year’s improvement plan. Council leaders, he implores, should reflect on the practical lessons offered by the report to ensure parents have the freedom to choose how their children receive support in their respective areas.

 

The Ombudsman’s report can be found here:

https://www.lgo.org.uk/assets/attach/6524/FR-Personal-budgets-F.pdf

PANS and PANDAS

PANS and PANDAS

PANS and PANDAS

We’re observing a number of children diagnosed with PANS and PANDAS.

 

PANS, or Paediatric Acute-onset Neuropsychiatric Syndrome, occurs when children suddenly develop intense neuropsychiatric symptoms like obsessive-compulsive disorder (OCD), tics, anxiety, and mood swings. Children with PANS might undergo sudden behavioural changes, including fears, obsessions, or compulsions. They may also display physical symptoms like sleep problems, irritability, and sensitivity to stimuli.

 

PANDAS, or Paediatric Autoimmune Neuropsychiatric Disorders – associated with streptococcal infections – is a subset of PANS. It occurs specifically when neuropsychiatric symptoms are triggered or exacerbated by a streptococcal infection. Its symptoms are similar to PANS, PANDAS presents with sudden and severe neuropsychiatric symptoms like OCD, tics, anxiety, and mood swings. However, these symptoms are directly linked to streptococcal infections.

 

One issue families are facing is that, due to a lack of familiarity with the condition, they have been falsely linked to Fabricated or Induced Illness (FII), a rare form of child abuse where a parent exaggerates or causes illness symptoms in their child. PANS PANDAS UK has produced a document to address this confusion. Working with Cathleen Long, an independent social worker and co-author of the British Association of Social Work’s practice guidance on FII and Perplexing Presentations, PANS PANDAS UK has written a guide for social work, healthcare, and education professionals.

 

This guide explains why many PANS and PANDAS families are unfairly accused of harming their child. It explores what professionals can do differently to ensure all children are kept safe without unfairly targeting families with medical conditions. It gives recommendations on how professionals can collaborate and assess children with symptoms of these post-infectious disorders in a trauma-informed way.

 

The guidance can be found:

 

https://www.panspandasuk.org/safeguardingandfii

ENGAGING YOUR AUTISTIC CHILD IN SOCIAL INTERACTION

ENGAGING YOUR AUTISTIC CHILD IN SOCIAL INTERACTION

ENGAGING YOUR AUTISTIC CHILD IN SOCIAL INTERACTION 

As parents, one of the biggest worries concerning our autistic children is the isolation which being neurodivergent brings. So often I meet adults who share with me that the worst and most disabling aspect of their lives is the loneliness. I’ve also had young adults tell me that they don’t want to always be lonely because life would be unbearable and they wouldn’t want to be here.

Wherever I do talks or trainings I am always asked by parents and carers what they can do to help children interact and play with others. Just to reassure you, many small children often begin exploring through play on their own and want things on their own terms. Sharing is a common skill to learn for all children of all abilities. But what can we do when our children really do struggle to engage with others ?

In my experience as a mum to 4 neurodiverse children and as a professional with almost 20 years experience, I would advise that tapping into something your child loves is a great place to start. Begin to play with them as a parent first. For instance if it’s trains or dinosaurs, musical instruments or building blocks that they adore, just get down on the floor with them and copy how they are playing. Put them in charge. Then slowly introduce your own ideas such as adding a bridge or an engine house if they are really into trains for example. I find this to be a really successful way to sow the seeds of the idea of playing and sharing play with other children.

With music I have done the same. I have copied the child and the noises they make which immediately gets their attention. I’ve often made huge break throughs in this way. Then after a few sessions I might introduce softer playing of an instrument and that gorgeous exploration through play starts to grow as they then copy me. If you make any activity you share COMPLETELY child-led, you build that essential trust, that communication, and the doors into their works beautifully open.

If your child is very sensory, set up floor or table play using sand, water beads, rainbow rice ( using food colouring) and water. Then just add cups, spoons or pans. After you have played with your child in this way, it introduces them to playing with others. Tables full of fidget toys can also help.

Many professionals are now urging parents and teachers to encourage sensory play as a part of the daily routine. Routine for autistic children is an incredibly important factor in their development. Adding sensory play into their daily routine helps them to process information, including atmosphere and surroundings and help them to become more comfortable in social situations.

Playful activities such as rough and tumble play, which are very physical can also help tremendously. Activities that involve jumping up and down, squatting, climbing, throwing and balancing stimulate gross motor skills as well as providing your child to explore their environment, and interact with other children. Best of all, this leads to playing with neurotypical children also, so they will begin to learn from each other in the most natural and inclusive way.

All children need all the warmth and advice they can get, but our differently wired children need these things even more. They need to feel they belong and the earlier this happens the better. It’s within human beings to be social; it’s part of who we are. No one should be excluded and as Einstein himself said, the best way to access education is through play.

I really hope this helps.

If you’d like to have more ideas, I share lots of ideas and activities every week ( almost daily ) on my public Facebook groups https://www.facebook.com/groups/rainbowtherapieskidsandfamilies/?ref=share_group_link

https://www.facebook.com/groups/482455567249684/?ref=share_group_link

Thad care everyone and I’ll see you next week.

Lots of love,

Giuliana

Sensory Processing Disorders: An Exploration

Sensory Processing Disorders: An Exploration

Sensory Processing Disorders: An Exploration

 

Sensory Processing Disorders, commonly abbreviated as SPD, are conditions that affect how individuals perceive and respond to sensory stimuli from their environment. These disorders are often misunderstood and can significantly impact a person’s daily life. In this comprehensive overview, we will delve into the world of sensory processing disorders, providing a clear and accessible explanation for those new to the subject. It is important to note that this article presents a layman’s overview of sensory processing disorder. It does not purport to offer definitive advice or conclusions but aims to encourage further research in this field.

 

What Are Sensory Processing Disorders?

 

Sensory Processing Disorders, also referred to as Sensory Integration Disorders, are neurological conditions that affect how the brain processes and responds to sensory information received through the five main senses: sight, sound, taste, smell, and touch. Additionally, these disorders can influence the perception of movement and balance, known as proprioception (our sense of body position, aiding coordination and movement) and vestibular (the system that controls balance and spatial orientation in humans) senses, respectively.

 

Individuals with SPD may experience sensory information differently than most people. They might be hypersensitive, making them more responsive to sensory stimuli, or hyposensitive, causing them to be less responsive. These differences can manifest in various ways, impacting an individual’s ability to engage in daily activities.

 

Types of Sensory Processing Disorders

 

Sensory Processing Disorders encompass a range of specific conditions, each affecting different sensory domains. The following is an overview of these types:

 

  1. Sensory Modulation Disorder: This involves difficulties in regulating and responding appropriately to sensory input. Individuals may overreact or underreact to sensory stimuli, leading to emotional and behavioural challenges. For example, a child might become agitated in response to a gentle touch.

 

  1. Sensory Discrimination Disorder: People with this disorder struggle to distinguish between different sensory stimuli. They may find it challenging to differentiate between similar textures, tastes, or sounds.

 

  1. Sensory-Based Motor Disorder: This relates to difficulties in motor coordination, where sensory issues affect an individual’s ability to perform tasks that involve balance, muscle control, and fine motor skills.

 

  1. Sensory-Based Feeding Disorder: Often seen in children, this disorder involves an aversion to certain textures, tastes, or smells, which can lead to feeding difficulties and nutritional challenges.

 

  1. Vestibular and Proprioceptive Dysfunction: These disorders affect an individual’s sense of balance and body position. People with vestibular issues may experience dizziness or imbalance, while proprioceptive issues can lead to challenges in understanding one’s body in space.

 

Causes and Symptoms

The exact causes of SPD are not fully understood, but it is believed to be a result of a combination of genetic and environmental factors. Symptoms of sensory processing disorders can vary widely and may include:

 

  • Overreacting or underreacting to sensory stimuli.
  • Difficulty concentrating and remaining focused.
  • Emotional dysregulation, including meltdowns or tantrums.
  • Poor motor coordination and balance.
  • Social challenges, such as difficulty in forming relationships.
  • Avoidance or seeking of sensory stimuli (e.g. avoiding bright lights or seeking deep pressure).

 

Diagnosis and Evaluation

Diagnosing SPD can be difficult as it often co-occurs with other conditions like Autism Spectrum Disorder, ADHD, or developmental delays. A comprehensive evaluation by a occupational therapist with other relevant professionals, is essential to determine the presence and specific type of sensory processing disorder. It is important to note that while there are some guidelines and checklists available, SPD remains a somewhat controversial and evolving diagnosis in the medical and psychological communities. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), used for diagnosing many mental health conditions, does not include SPD as a distinct diagnosis, which adds to the complexity of its diagnosis.

 

 

Treatment and Management

Treatment approaches for sensory processing disorders are tailored to the individual’s specific needs and symptoms. Some common interventions include:

 

  • Sensory Integration Therapy: A structured therapy that exposes individuals to sensory stimuli in a controlled and gradual manner, helping them adapt to sensory input.

 

  • Occupational Therapy: Occupational therapists work with individuals to develop strategies and coping mechanisms for sensory challenges, helping them better participate in daily activities.

 

  • Environmental Modifications: Making adjustments in the individual’s environment to reduce sensory triggers or create sensory-friendly spaces.

 

Living with SPD

Living with SPD can present daily challenges, but with the right support and strategies, individuals can lead fulfilling lives. It’s crucial to create a supportive and understanding environment for those with sensory processing disorders. Additionally, raising awareness about SPD is essential to reduce stigmatization and promote early diagnosis and intervention.

 

In conclusion, Sensory Processing Disorders are complex neurological conditions that affect how individuals perceive and respond to sensory stimuli. Understanding the various types, causes, and symptoms is crucial in providing appropriate support and intervention. By embracing a multidisciplinary approach and fostering awareness, we can improve the quality of life for those children and adults affected by SPD.

Language Skills: The Foundations of Communication

Language Skills: The Foundations of Communication

Language Skills: The Foundations of Communication

 

This article given an overview of the components of language from a layman perspective. It is not intended to be a definitive guide, but rather is designed to provide foundational knowledge about areas of communication often referred to in (amongst other things) professional reports. Please note the language used reflects the technical vocabulary of the subject matter and is certainly not intended to be disparaging.

 

Language constitutes a fundamental element of human communication. It serves as the means through which we convey our thoughts, emotions, and ideas to others. However, language is not a singular entity; it comprises two essential components: receptive language and expressive language.

 

Receptive Language

 

Receptive language pertains to our capacity to comprehend and make sense of the words and messages conveyed by others. Think of it as the “listening” or “reading” facet of language. Receptive language equips us to fathom spoken and written words, allowing us to grasp what we hear in conversations or read in books, articles, and online content.

 

Receptive language encompasses various critical elements:

 

Auditory Comprehension (Understanding spoken language): This entails the ability to recognise and interpret spoken words, sentences, and more extensive pieces of spoken information.

 

Reading Comprehension (Understanding written language): Reading comprehension is the analogous skill for written language. It involves apprehending the meaning of words and sentences in written texts, from books to digital media.

 

Listening Skills: Listening skills are imperative for attending to spoken information, processing it, and responding suitably. This skill is vital for classroom learning, everyday conversations, and any situation involving verbal communication.

 

Vocabulary: A diverse vocabulary, a wide range of words, is indispensable for receptive language. A broader vocabulary enhances our ability to comprehend what others are saying or writing.

 

Consequences of Receptive Language Disorders or Delays:

 

Obstacles in the development of receptive language can result in challenges in understanding spoken or written information. These difficulties can manifest as:

 

Disordered Receptive Language: Signifying a significant and ongoing issue in comprehending spoken or written language, this condition may arise from specific language disorders or conditions such as aphasia. Individuals with disordered receptive language may find it exceedingly challenging to grasp spoken or written content, significantly affecting their daily lives.

 

Delayed Receptive Language: This refers to a situation in which the development of this skill progresses more slowly than expected for a person’s age, but there is the potential for it to catch up over time with appropriate support and intervention. Children with delayed receptive language may require extra assistance to attain age-appropriate language understanding.

 

Expressive Language

 

Expressive language empowers us to communicate our thoughts, emotions, and ideas to others through spoken or written words. It underpins effective communication, enabling us to articulate desires and share knowledge through speech and writing.

 

Expressive language can be broken down into several key components:

 

Oral Expression (Speaking): This entails using spoken words, sentences, and non-verbal cues such as tone of voice and gestures to communicate with others.

 

Written Expression (Writing): Written expression involves conveying ideas through written words on paper, digital media, or any written form. It is a crucial skill for tasks such as crafting essays, reports, or sending emails.

 

Grammar and Syntax (Proper sentence structure and word order): Effective expressive language depends on correct sentence structure and word order, adhering to grammar and syntax rules to ensure clear and understandable messages.

 

Vocabulary Selection: Similar to receptive language, a robust vocabulary is critical in expressive language. The words we select have a profound impact on how well we communicate our ideas and emotions.

 

Articulation and Pronunciation (Clear speech sounds and correct word pronunciation): Articulation pertains to the clarity of speech sounds, while pronunciation concerns the accurate enunciation of words. Clear articulation and pronunciation enhance the comprehensibility of spoken language.

 

Consequences of Expressive Language Disorders or Delays:

 

Challenges in expressive language development may hinder the effective communication of thoughts and ideas. These challenges can manifest as:

 

Disordered Expressive Language: A “disordered” expressive language indicates a significant and ongoing problem in conveying thoughts and ideas through spoken or written words. This condition may result from expressive language disorders or speech disorders, making effective communication challenging and affecting relationships, education, and work.

 

Delayed Expressive Language: This refers to a situation in which the development of this skill progresses more slowly than expected for a person’s age, with potential for improvement over time with the right support and intervention. Children with delayed expressive language may require additional assistance to attain age-appropriate language expression.

 

Both receptive and expressive language skills are indispensable in daily life, contributing to success in education, work, and social interactions. These skills are the foundation of effective communication, enabling us to connect with others, learn, and express thoughts and emotions.

 

The development of these language skills commences in early childhood and continues throughout life. Children acquire receptive language skills by listening to and interacting with caregivers, while expressive language skills develop as they begin to speak and write. As individuals grow, they refine and expand these skills through education, practice, and exposure to diverse experiences.

 

In conclusion, receptive and expressive language are pivotal aspects of communication. Receptive language allows us to understand the words and messages of others, while expressive language empowers us to effectively convey thoughts and ideas. These skills are essential in daily life, from school and work to social interactions. By honing these language skills, we enhance our ability to connect with others and achieve our goals.

Halloween Tips for Autistic Children

Halloween Tips for Autistic Children

Halloween Tips for Autistic Children

Trick or treating can be a daunting prospect for autistic children. A few tips for a happy Halloween.

For some children , Halloween can be stressful and demanding. Both my sons Patrick and Angelo have always loved Halloween. Every year we design a pumpkin face and buy sweets to give the trick or treaters.

Patrick enjoyed dressing up when he was younger. One particular year I made him a dinosaur costume out of cardboard and crepe paper. He thought it was wonderful and wore it in the evening for a whole week!

Some children prefer to celebrate Halloween by baking cakes and making masks and lanterns.

Talk about the day to explain what will happen, depending on the level of understanding of your children.

Here are a few tips on preparing your child for Halloween:

Costumes

Discuss and decide together what costume your child will choose.

Take into account not only his or her preferences, but also sensory concerns, for example a Spiderman costume may include a full mask – which can become overwhelming.

Some children love face paint, but others can’t take the sticky sensation. Make a plan that you can stick to.

Happy Halloween tips for Autistic children
Happy Halloween tips for Autistic children

Plan!

Choose a time to leave the house.

Plan a route.

Discuss what will happen when you come home – can they dump their sweets on the floor? What may they eat?

Keep it simple.

Knowing your child, how can you expect them to react? If they can handle just one house, that’s fine.

Create a social picture story. Use digital photos, images from the web, or other sources to show and tell exactly what your child will do.

Include all the steps, not forgetting that they must knock at the door, say “Trick or Treat!” and “Thank You!”

Read the social story together, not once but as often as possible.

From time to time, also ask – “what if no one is home?” Help them understand that it’s ok to skip a house, to take a treat from a basket (if that’s ok with you), and so on.

Practice, practice!

Put on the costume many times before the ‘Big Night’ and work out any unpredictable situations, such as a stuck zip!

Role-play the entire trick or treat scenario as often as you can and dont forget have fun and stay safe!

 

Anna Kennedy OBE 

Chairperson

 

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