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The Complex Process of Parenting a Child with Special Needs

The process of parenting a child with special needs is complex and can be associated with seeking special care support and need for the children (Cologon, 2014). The same is also reflected in the case of Mrs Marko. Mrs Marko planned for her child in the late years of her life. The family of Mrs Marko was not supportive of this decision of hers, limiting her access to emotional support for the management of her who was born with autism. It is natural for parents to have expectations from their child and participate in the years of his development actively. However, this was not possible in the case of Mrs Marko. The child failed to communicate, and she had to engage in multiple therapies and interventions.

Throughout the analysis of the case, one primary thing that is evident in the case of Mrs Marko is that she wants her child to have a "normal" life and something that is not "special" or "exclusive". She also struggles with finding the educational institutions and services that are "best" for her child. In conclusion, I feel that the parenting experience of Mrs Marko has been stressful and has impacted her own life in a significant manner. It has altered her activities and social engagements as well. This is consistent with being a parent of a child with complex needs as it demands constant care and support. Hence, I can conclude that the process of parenting for Mrs Marko has been associated with stress and anxiety from the very early stages. This has also impacted her individual self and her social, emotional, and psychological well-being.

Every parent wants their child to be empowered, enabled, and succeed in life, and the same has been the expectations of Mrs Marko, where she constantly urged the facilitators to encourage her child to be included toward "normalcy". However, working through the special needs of a child with intellectual and learning disabilities can be draining (Besio et al., 2017). Many families face the challenge of inclusion of children in the social structure as the children with disabilities are often neglected and are not provided effective support in the early years of growth and development (Slee, 2019). This prejudiced and flawed understanding of disability is ingrained through the sociohistorical and socio-cultural contexts of the norms and impacts the perspectives and experiences of families and of children with disabilities. The same is evident even in the case of Mrs Marko, where her mother tells her, "what else do you expect?” in the context of her son, who has an intellectual disability. This highlights one of the core problems and stressors associated with the disability, that is, the social construction of disability and the stigma and prejudice associated with the same. The trauma inflicted on the family that has a child with a disability is the trauma inflicted by society and not by the child (Cologone, 2014). These norms have a major impact on the development of the child and that of the process of parenting. The emotional and psychological load of parenting a child with intellectual disabilities like autism is associated with increased stress in the parents who have to learn to navigate their own life as well as that of the child around the disability to ensure improved inclusion. The lack of support from the social structures that are exclusionary results in an additional toll on the individual with special needs and on the parents who are secluded and are isolated from everyday life and from the definition of "normalcy".

Reflection on Mrs Marko’s Experience

Individualised Family Service Plan for Stephen

Name:

Stephen

Date of birth: XX.XX. 2019

Date of meeting:

March

Location

Learning facility

Individuals present in the meeting

Mother, Father, Inclusion service facilitator, therapist.

Issues discussed  and their need

Action to be taken

Individuals to be involved

Regular updates on Stephen's developments by the developing of an evaluation plan

As Stephen develops new skills and learns to navigate through the different environments in the facility, it is important that his progress is recorded and updated frequently.

· Development of charter of growth for Stephen

· Ensuring the development of progress notes for academic, social, and emotional skills developed (Petriwskyj, 2010).

· Identification of triggers by observations that may result in repulsive behaviour from Stephen so that they can be avoided (Slee, 2019).

Inclusion support facilitator

Mother of Stephen

Father of Stephen.

Educators and workers of the facility.

Occupational Therapy

The support of occupational therapy will help in the improved engagement of Stephen in activities and promote his independence. It will also help in the development of daily living skills and motor skills.

(Cognitive development, self-help)

· Fixing sessions with the occupational therapist

· Recording progress and evaluation of outcomes.

(Bryant & Winchcombe, 2020).

Inclusion support facilitator

Mother of Stephen

Father of Stephen.

Educators and workers of the facility.

Therapist

Management of seizures

Focus on minimisation of triggers to limit the seizures and to reduce their incidence for the improved well-being of Stephen.

(Physical Development)

· Identification of triggers

· Medication management and adherence.

Inclusion support facilitator

Mother of Stephen

Father of Stephen.

Educators and workers of the facility.

Neurologist

Social skills development

Will assist in the improvement of communication and social engagement.

(Social and emotional development, communication development)

· Engaging in social activities

· Development of social navigation strategies.

· Enhancing communication skills.

(Ashcroft et al., 2021) 

Inclusion support facilitator

Mother of Stephen

Father of Stephen.

Educators and workers of the facility.

Therapist

Strengths

Interests

· Have strong cognitive abilities: able to solve complex puzzles and is able to build block towers.

· Strong attention span: He is able to focus on things that interest him.

· Is able to follow routines: Is comfortable with fixed timetable and is able to adhere to the routines

· Can eat finger food independently: Is able to eat finger food independently and drink water from a cup by holding it with both hands, indicative of self-sufficiency.

· Is able to shut the noise of people successfully if the children are at a distance: Is able to focus on tasks by minimising distractions. This can also ensure the accommodation of more children in his environment.

· Is able to recognise and identify his possessions: Stephen is able to recognise his name when he is called or when his name is used for labelling his drawings and his possessions.

· Likes drawing: Likes to scribble and draw on paper.

· Has an interest in games that require cognitive skills: Enjoys playing with blocks and puzzles. He is also oriented toward tasks that require precision and detail, such as solving complex puzzles.

·  Enjoys quiet places: Likes to be in a less noisy environment and likes to play in the sandpit area.

· Enjoys dancing: Focussing on the dancing moves and thus can engage in the group activities of his particular interest.

· Likes to explore nature: Stephen likes to play with leaves, soil, and sand, indicative of his interest in naturalistic substances.

Level

How the child’s rights are currently being met

What early childhood educators have to do to ensure rights are met (from observations and discussions with parents and others)

1: Rights to food, shelter, warmth etc.

Stephen gets access to finger food on certain days in the facility.

Stephen gets agitated when he is not provided with finger food. This can also lead to seizures. Hence, it should be the primary responsibility of the educators to ensure the availability of nutritious and healthy finger food for Stephen. This will help prevent agitation and seizures and help conserve the fundamental right to food (Petriwskyj, 2010).

Stephen should also be encouraged to use safe cutlery and should be slowly encouraged towards diverse food items (Hughes-Lynch, 2022).

2: The right to physical safety – avoiding external dangers and things that might harm: safety, security and protection;

The right is being met by keeping surroundings of Stephen safe.

The environment of Stephen should be kept safe and with close attention to detail. Stephen develops seizures, so it should be ensured that his environment is risk-free and his medications are adhered to (Leventhal-Belfer, 2022).

3: The right to love, affection, care, attention, closeness to another person;

Stephen gets limited attention from his father.

Stephen should get adequate care and attention from both his parents while at home. The parents should understand and acknowledge the importance of shared parenthood and focus on providing love and care to Stephen to help meet his right to love, care and affection (Grandin & Moore, 2021).

4: The right to feel valued and worthy, to be valued by others, to be accepted, appreciated and have status;

The right is being met by the promotion of independence and effective inclusion in activities with peers.

The educators should ensure the development of an informed practice for providing support. Encouragement of independent activities and skills should be promoted (Devine & Mooncey, 2021).

5: The right to realise one’s potential.

The right to realise one’s potential is associated with the development of self-interests for Stephen.

This should be further enhanced by fostering support for the facilities and encouraging self-actualisation and independence for Stephen (Brown, 2021).

The most important recommendation based on the rights statement is to focus on ensuring that Stephen feels valued and worthy.

The action plan for the same has been summarised below:

Action

Strategy

For Stephen to have opportunities to develop independence by acquiring life skills.

Strategy 1

Introducing skills and lifestyle changes slowly: Stephen is a child with diagnosed autism and is repulsed by changes in his everyday life. The enabling changes that promote life skills, such as the use of cutlery, should be done gradually (Brown, 2021).

Strategy 2 

Development of a schedule: Development of a schedule with skill development training as a fixed part of it will help Stephen engage in skill development activities effectively (South, 2020).

For Stephen to have opportunities to develop strong communication skills to engage in social activities and participate more effectively in group activities

Strategy 1

Promoting simplified language for conversation: Having simplified language in communication can help encourage the participation of individuals with learning disabilities in communication (South, 2020).

Strategy 2

Focussing on non-verbal communication:

Focussing on non-verbal communication can help in the engagement of Stephen in the process of socialisation and help in encouraging communication skills (Brown, 2021).

The development of independent skills and life skills for individuals with disabilities like autism is essential. These skills include the development of knowledge of personal care, clothing, management of food and diet, and organisation is crucial. The development of life skills in individuals initiates in the early learning years. However, their development may require additional support in individuals with intellectual disabilities (McAuliffe et al., 2021). This is, therefore, the primary recommendation that should be applied to Stephen. This will help develop skills that will help foster growth and development of Stephen. Children with autism like Stephen do not like frequent changes in their routines. Therefore, the changes like replacement of the finger food with items that use cutlery should be introduced gradually. The implementation of these gradual changes will help enhance the scope of Stephen's skill set and help him become more independent. In addition, the development of a schedule will help in focussing on adherence to the skill development activities (Brown, 2021). This can promote the improvement of the skills and focus on engaging the individuals for skill development in Stephen. For the application of the first strategy, the introduction of skills and lifestyle changes slowly, the IFSP team individuals that should be involved include educators, parents, and the inclusion support facilitator. For the application of the second strategy, the development of a schedule, the IFSP team individuals that should be involved include educators, parents of Stephen, and the inclusion support facilitator.

The second supported action for the case is for Stephen to have opportunities to develop strong communication skills to engage in social activities and participate more effectively in group activities. Children with autism struggle to have strong communication skills. This can result in further seclusion and isolation of children and impact their abilities of socialisation. Therefore, the goal should be to focus on enhancing the communication abilities of Stephen, which will help in enhancing his social skills as well. The first strategy is to focus on using simplified language for communicating. The use of simple language that is easy to comprehend can significantly help children with intellectual disabilities like autism (Slee, 2019). It helps in easy comprehension and can promote communication skills. The second strategy for this approach is associated with non-verbal communication. Non-verbal communication can effectively enhance communication and socialisation skills for children with autism (South, 2020). Hence, the same should be applied in the care of Stephen. For the application of the first strategy, the use of simplified language, the IFSP team members involved in the process of care include the parents, educators of the care facility, and the communication therapists. In conjunction, for the application of the second strategy, the use of non-verbal communication, the IFSP professionals involved will include parents of Stephen, educators, and therapists to guide the process.

Reference List

Ashcroft, W., Argiro, S., & Keohane, J. (2021). Success strategies for teaching kids with autism. Routledge. https://www.taylorfrancis.com/books/mono/10.4324/9781003238294/success-strategies-teaching-kids-autism-wendy-ashcroft-sue-argiro-joyce-keohane 

Besio, S., Bulgarelli, D., & Stancheva-Popkostadinova, V. (2017). Play development in children with disabilities. De Gruyter Open Poland. https://www.degruyter.com/document/doi/10.1515/9783110522143/html 

Brown, T. E. (2021). ADHD and Asperger syndrome in smart kids and adults: Twelve stories of struggle, support, and treatment. Routledge. https://www.taylorfrancis.com/books/mono/10.4324/9781003141976/adhd-asperger-syndrome-smart-kids-adults-thomas-brown 

Bryant, W., & Winchcombe, M. (2020). Recovery from ill health from an occupational perspective. The Wiley Handbook of Healthcare Treatment Engagement: Theory, Research, and Clinical Practice, 515-530. https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119129530.ch27 

Cologon, K. (2014). Inclusive education in the early years: Right from the start. Oxford University Press. https://researchers.mq.edu.au/en/publications/inclusive-education-in-the-early-years-right-from-the-start 

Devine, A., & Mooncey, S. (2021). A parent's guide to autism diagnosis: What to expect and how to support your child. Jessica Kingsley Publishers. https://books.google.com/books?hl=en&lr=&id=8t4vEAAAQBAJ&oi=fnd&pg=PP1&dq=autism+management+for+kids+book+&ots=1rgjCuXQAV&sig=3wvWDpI4SngV1Buvoess-aBur6E 

Grandin, T., & Moore, D. (2021). navigating autism: 9 Mindsets for helping kids on the spectrum. WW Norton & Company. https://books.google.com/books?hl=en&lr=&id=wRkrEAAAQBAJ&oi=fnd&pg=PT9&dq=autism+management+for+kids+book+&ots=86bAK0k7Ne&sig=dk1TVrNtUPJb7EmnVYipsnJ4dn8 

Hughes-Lynch, C. E. (2022). Parenting bright kids with autism: Helping twice-exceptional children with Asperger's and high-functioning autism. Routledge. https://books.google.com/books?hl=en&lr=&id=JXRYEAAAQBAJ&oi=fnd&pg=PT5&dq=autism+management+for+kids+book+&ots=twiYhnfMN4&sig=ncjMffA1iATrUuERN-lpSHn0RCE 

Leventhal-Belfer, L. (2020). College on the autism spectrum: A parent's guide to students' mental health and well-being. Jessica Kingsley Publishers. https://books.google.com/books?hl=en&lr=&id=ZwuzDwAAQBAJ&oi=fnd&pg=PP2&dq=autism+management+for+kids+book+&ots=6ug6F62qX5&sig=_llNYk5sF8ULQiM57Xzu9CpAfi4 

McAuliffe, T., Thomas, Y., Vaz, S., Falkmer, T., & Cordier, R. (2019). The experiences of mothers of children with autism spectrum disorder: Managing family routines and mothers' health and well-being. Australian Occupational Therapy Journal, 66(1), 68-76. https://onlinelibrary.wiley.com/doi/abs/10.1111/1440-1630.12524 

Petriwskyj, A. (2010). Who has rights to what? Inclusion in Australian early childhood programs. Contemporary Issues in Early Childhood, 11(4), 342-352. https://journals.sagepub.com/doi/abs/10.2304/ciec.2010.11.4.342 

Sims, M. (2011). Social inclusion and the early years learning framework: A way of working. Pademelon Press. https://rune.une.edu.au/web/handle/1959.11/10394 

Slee, R. (2019). Belonging in an age of exclusion. International Journal of Inclusive Education, 23(9), 909-922. https://www.tandfonline.com/doi/abs/10.1080/13603116.2019.1602366 

South, M. (2020). Autism, emotions, and mindfulness. In Mindfulness for Everyday Living (pp. 53-67). Springer, Cham. https://link.springer.com/chapter/10.1007/978-3-030-51618-5_5 

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