Early Years

Through their earliest years at home and into their school years, children with neurologic disorders face unique challenges. But there are also opportunities for caregivers and teachers to engage with these children in ways that nurture their development and brighten their future. Here are insights and suggestions from child neurology experts:

Being together

The bond between a child and a caregiver is invaluable. Caregivers know the most about their child. They see them grow every day and have the most influence on their development. Despite the range of difficulties that a child with a neurologic disorder may have, they will benefit greatly from close contact with their caregivers and families.

The caregiver-child relationship is forever changing. Strong bonds of attachment form after birth, with the caregiver trying to meet the baby’s every need. When the child reaches age two years, the relationship begins to change as caregivers start to educate and guide their child, teach them to begin doing things for themselves, and encourage desired behaviors. This is just as important for a child with a neurologic disorder.

Couple relationships

Managing the changes that take place in your life when having a child with any form of disability can have many positive aspects, including making your relationship as a couple stronger, helping you develop coping skills together, increasing communication, and promoting a greater sharing of caregiver responsibilities. However, your situation can also put you under a range of extra stresses, including social, emotional, physical and financial pressures. In turn, this can put strain on your relationship.

Contact a Family, a UK-based organization, conducted a survey of over 2,000 caregivers asking them how caring for a disabled child had affected their relationship with their partner. The results of that survey are summarized in this publication: Relationships and Caring for a Disabled Child.

One Plus One, a team of researchers, practitioners and information specialists, published a report that addresses the pressures that affect caregivers’ relationships as they care for a child with a disability: Growing together, or drifting apart? Children with disabilities and their parents’ relationships.

Sibling relationships

Having a brother or sister with a neurologic disorder may add many unique elements to the sibling relationship. These components can foster a close bond between the siblings, and even a great sense of pride, trust and maturity in the unaffected sibling. It is important for caregivers and providers to acknowledge this special relationship and the effects it is having (positive and negative) on both siblings. For example, sometimes siblings are raised in a family where a lot of the family’s time and resources, caregivers’ attention, and the attention of professional services are given to their disabled sibling, causing feelings of isolation or resentment. It is important that unaffected siblings get information about their brother’s or sister’s disability, and be acknowledged for who they are in the family system.

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns: www.siblingsupport.org

For more information on sibling relationships, see the March 2015 edition of our e-newsletter, “Families First.”

Understanding your child’s behavior

The term “challenging behavior” is used to describe behaviors such as self-injury, aggression, shouting and screaming, and destroying the environment, but it can also include many other behaviors. Some children with neurologic disorders will exhibit challenging behaviors that are often linked to their diagnosis. For example, if your child is not able to communicate easily, he/she may become frustrated which can lead to these behaviors. This could also be true if a child is unable to do things because of the physical aspects of their disability or even due to the pain they are experiencing. Challenging behavior does not have one cause and, depending on the severity and frequency, can be difficult to manage.

If your child is exhibiting a concerning behavior, consider the following, which may help you to understand the behavior and find a way forward:

  • Is this behavior really a challenge and, if so, for whom?
  • What might be causing the behavior?
  • How can possible causes be assessed?
  • What is the best way to change the behavior?
  • What sort of change am I aiming for?
  • Is this the right time to try to change the behavior?
  • What help do I need to change the behavior?
  • How will I know whether things are getting better or not?
  • What if I can’t get the help I think I need?

The Center for Effective Collaboration and Practice provides a comprehensive document on behavior management at school: Addressing Student Problem Behavior – An IEP Team’s Introduction to Functional Behavioral Assessment and Behavior Intervention Plans

Contact a Family, a UK-based organization, also provides a comprehensive booklet: Understanding your child’s behavior.

Interacting and communication

Some children with neurologic disorders have communication challenges. Your child may have delayed development, which means it may take longer for them to learn to communicate. If you are concerned about your child’s speech development, speak to your pediatrician or child neurologist.

It is important that you talk to your child even if they cannot speak back; and if they need extra help when learning to speak, you should not be tempted to finish words and sentences for them. You can use fun activities such as reading stories and singing songs to encourage your child to practice communication. Culturally reflective songs from your own ethnic background will support your child’s positive sense of identity and their vocabulary.

We don’t just communicate by speaking; we share information non-verbally as well as through body language and facial expressions. Some conditions may impact the way your child is able to interpret non-verbal communication. Even if your child is unable to communicate verbally, there are other forms of communication and equipment that you can use to assist them.

Children who have a disability may be eligible for early intervention services under a federal law called the Individuals with Disabilities Education Act (IDEA). If the child meets eligibility criteria for early intervention services, he or she may receive assistive technology devices and services as part of the services provided. The Individual Family Services Plan (IFSP) team, including the parents, makes the decision whether those services are needed based on assessment information. If so, these services are provided to the child through a written IFSP; and it is required to be reviewed and updated regularly.

The National Institute of Deafness and Communication Disorders provides a fact sheet on Assistive Devices for People with Hearing,Voice, Speech, or Language Disorders.

And the PACER Center, Technical Assistance Alliance provides a fact sheet on Assistive Technology for Infants, Toddlers, and Young Children with Disabilities.

Helping your child make sense of the world and understand their condition

There are a range of things you can do to help your child make sense of the world and understand their condition. These include:

  • Find ways to overcome problems and obstacles to teach them about their world.
  • Be consistent.
  • Help them to build resilience and to know their rights – including their right not to be subjected to discrimination
  • Encourage your child to take part in play and a range of stimulating activities.
  • Provide positive praise to reward your child.

Support your child’s multiple identities. Your child may have additional needs but he/she may also have their own ethnic background, their own nationality, a distinct religion or belief, a home language, etc. These all need recognition and positive support.

Do2learn provides a range of materials to assist caregivers and practitioners in helping children to make sense of the world.

Developing the senses

Sensory experiences include things we take for granted such as touch, movement, body position, hearing, vision, taste, smell, and even the pull of gravity. We describe the brain’s processing of this information as sensory integration. Sensory integration is very important for the development of learning and behavior.

The process of sensory integration begins before birth and continues through the lifetime. The majority of sensory integration happens before the early teenage years. If there is a problem with this integration of sensory information it can affect learning, behavior and motor skills. Sensory integration problems usually become apparent in young children.

Difficulty tolerating or processing sensory information is common in children with a variety of neurologic disorders, such as:

  • Autism spectrum disorder
  • ADHD
  • Fragile X syndrome
  • Down syndrome
  • Intellectual disabilities
  • Specific learning disabilities
  • Post traumatic event, illness or injury

Some common sensory issues include:

  • Being particularly sensitive to touch, sounds, movements, tastes and smells
  • Dislike of particular clothing fabrics, waistbands, etc.
  • Avoiding a number of foods
  • Limited body awareness
  • Poor development of personal care skills
  • Poor attention and concentration
  • Dislike of social settings
  • Particularly high or low activity levels
  • High or low pain threshold

Early intervention is important in the management of children with suspected sensory impairments to help them interact with their environment in a more adaptive way as they develop. If you think your child may be experiencing sensory concerns, speak to your pediatrician or child neurologist who may refer you to an occupational therapist, physical therapist, or speech and language therapist. Once an assessment has been made, the professional will be able to consider which course of action will be most suitable to address any needs.

Playing

“Play is the work of the child.”
-J. Piaget

Play is an important part in a child’s quality of life. This reality is no different for children with neurologic disorders. The recreational activities they will be able to enjoy may depend on their developmental ability, the child’s age, and the family’s circumstances.

Children with special needs often miss out on leisure and play activities. Caregivers trying to access facilities for their child may find that many facilities are unsuitable, transport to and from the activity may be difficult, and issues regarding attitudes of staff and members of the public may arise.

What can be done to maximize play opportunities and enjoyment for your child?

  • Ensure your child engages in ordinary play.
  • Your child will want you to be involved in their play, so ensure you make time to enjoy each other and have some silly play time.
  • Ensure you go at your child’s pace so they have the time to get as much from the play time as possible.
  • Spend some time observing and thinking about what your child enjoys most and arrange fun, stimulating play times that incorporate these things.
  • Ensure a wide range of play activities to aid development (for example turn-taking games, learning about food, play-dough and paint, music and movement games, and relaxation time such as reading a story).
  • Provide opportunities for your child to play near a child who is doing something similar so they can learn from one another.
  • Keep verbal instructions simple, using descriptive words such as long, short, big, small, etc.
  • Use gestures and facial expressions to make it clear what you are doing.
  • Encourage your child to talk about what they are doing.
  • Choose suitable equipment and avoid over stimulation; limit the amount of materials and toys that are out at once.

The Washington Access Fund has compiled a resource list designed to provide some helpful suggestions for toys, play and recreation for kids with disabilities. Toys & Play for Children with Disabilities Resource List

Sleep

Children with neurologic conditions often have problems with sleep, which can impact their overall wellbeing. A child may have difficulty settling down at bedtime, wake frequently or very early, or may be anxious about being left alone at bedtime. If a child is not sleeping, it can have an impact on the entire household. It is important to get the support needed to help your child sleep well. Speak to your pediatrician or child neurologist about your child’s sleep habits if you are concerned or notice a change.
ThisAbility.org provides additional information and resources on Spotting Sleep Problems in Special-Needs Children.

Eating and drinking

Eating a meal can be particularly challenging for children with disabilities. A lack of fine motor skills, sensory restrictions, and coordination difficulties are some of the many reasons that may delay the learning process. This can be frustrating for you and your child. This site is packed with fact sheets and resources to address aspects of eating and drinking: Novita Children’s Services

You can get more information and advice from Contact a Family, which provides an information sheet on Feeding and Eating.

Challenges with motor skills

It is possible that a child with a neurologic disorder may have challenges with motor skills. This could be their fine motor skills, such as being able to grasp a spoon or fasten buttons, or it could be their gross motor skills, which means they could have difficulty with larger movements such as crawling.

To help with motor skills a child may see a physical therapist. They will assess your child and show you exercises and positioning which you can use at home. They may also recommend special equipment such as a standing frame to help develop specific skills. Your child may need to have an ongoing program tailored to their needs. Speak with your pediatrician or child neurologist about the possibility of a referral to a physical therapist.

Toileting

Many children with neurologic conditions can develop the skills needed for toilet training but may find them more of a challenge to learn. Children with severe conditions may never be able to use the toilet themselves, but you will still want to develop a routine. You should talk to your child neurologist or pediatrician if you need support with this.

The American Academy of Pediatrics offers information on Toilet Training Children with Special Needs.

Home environment

As your child grows up, you may find that you need to make changes to your home or acquire specifically designed or adapted pieces of equipment. An occupational therapist can also be helpful in making home modification recommendations.

Safekids provides tips on how to keep the home safe for children with special needs:  www.safekids.org/safety-basics/special-needs

Financial Considerations

Caring for a child with a neurologic disorder may impact your financial situation. You may acquire additional financial expenses related to your child’s disorder such as therapy costs, specialized day care, and adaptations and modifications of your home. You may need to reduce your work hours or stop working to stay home and care for your child. There is a range of financial support resources or programs to help with these additional costs.

Benefits for Children with Disabilities – This booklet is written primarily for the parents and caregivers of children with disabilities and adults that have been disabled since childhood. It explains the Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and how the Social Security Administration evaluates disability claims for children.

Apply for Disability Benefits – For achildren under age 18 – This resource explains how to apply for disability benefits for minors. It provides brochures and fact sheets that offer information to prepare you for the application process.

The Parent Advocacy Coalition for Educational Rights (PACER) Center and the National Endowment for Financial Education® (NEFE®) provide a publication to help you create a sense of order in your life and maintain control over your finances as you care for your child and prepare him or her for adulthood. Access the publication here: POSSIBILITIES: A Financial Resource for Parents of Children with Disabilities.

Speak with your pediatrician or child neurologist about how to access a social worker in your community to assist you in locating appropriate financial resources.

School Years

Choosing a school and childcare

Caregivers of children with special needs have a right to choose which type of school they would like their child to attend. Options may include a local public or charter school, a private special needs school, or homeschooling.

The Federation for Children with Special Needs and the Massachusetts Department of Education have published A Parent’s Guide to Special Education that provides information on special education laws, evaluation of children with special education needs, Individualized Education Program, and Free and Appropriate Public Education (FAPE).

The U.S. Department of Education provides A Guide to the Individualized Education Program (IEP) and a publication on Free Appropriate Public Education (FAPE) for Students With Disabilities.

ChildCareAware provides an informational pamphlet on Choosing High-Quality Child Care for a Child with Special Needs

Developing the senses

What is experienced through the five senses of sight, hearing, taste, smell, and touch creates neural pathways in the brain. It is through stimulating the senses by varied experiences that learning and memory formation takes place. It is essential, therefore, for children to have such experiences throughout the period when their brains are developing. It is equally important, however, to be aware that some children with neurologic disorders may process sensory inputs in different ways or may not, as in the case of blindness or deafness, have sensory inputs.

Monitor your child’s sensory well-being during their school years and ensure their school is aware of any sensory preferences to minimize problematic behavior where possible. Information from your occupational therapist should be communicated to the school to ensure consistency across settings.

The Indiana Resource Centre for Autism offers an informational resource: Sensory Integration: Tips to Consider.

Playing

Play can aid your child’s development while in school by:

  • Providing opportunities to develop their identity and self-esteem.
  • Helping your child understand that they have the right not to be subjected to discrimination, to assert that right, and to build their resilience.
  • Helping your child to manage and deal with difficulties and setbacks.
  • Providing an opportunity to be in control of a situation.
  • Allowing the practice of coordination and movement skills.
  • Enabling your child to meet other children and interact.
  • Aiding the development of an active imagination and improving concentration.
  • Providing bonding time for you and your child.
  • Teaching your child crucial cultural and family values.

The National Lekotek Center provides an array of services to improve the lives of children with special needs through the utilization of toys and play. See their videos on play for kids with Down syndrome, cerebral palsy and autism.

Sleep

School age children and adolescents often don’t get enough sleep for a variety of reasons. Children with many neurologic disorders are more prone to sleep disorders or disturbances and condition-related factors that can interfere with getting a good night’s sleep. Despite this, it is important to:

  • Ensure regular bedtimes and wake times.
  • Have a consistent bedtime routine in place.
  • Avoid sleeping in on weekends.
  • Ensure the bedroom environment is conducive to sleep (e.g. dark, quiet and comfortable).
  • Turn off equipment likely to affect sleep such as TV’s, computers etc.
  • Avoid caffeine and any stimulants.
  • Contact your pediatrician or child neurologist if sleep problems persist.

A sleep strategies toolkit was developed with funding from the Autism Treatment Network (ATN), a program of Autism Speaks. Although written with individuals with autism in mind, the toolkit will be helpful for a variety of individuals. See Strategies to Improve Sleep in Children with Autism Spectrum Disorders.

Eating and Drinking

As a result of their condition, some children may be reluctant to eat or drink. For example, they may not like the texture of some foods or may be uncomfortable when seated in a position to eat. If your child has a condition such as autism, they may want their food presented on the plate in a particular way. Try not to worry too much; if you are anxious at meal times, your child will recognize this.

If a child is having problems eating and drinking there are a number of practitioners who may be able to help. A team of practitioners (a multidisciplinary team) including a speech and language therapist (usually taking the lead), physiotherapist, occupational therapist, and perhaps a dietician may need to be involved.

Speech and language therapists can contribute to the assessment of a child to help discover why they have eating or drinking problems, refer children on to other professionals who may be able to help, recommend food or drinks to try, develop techniques to help feeding and drinking, and devise meal-time routines. Speak to your pediatrician or child neurologist to discuss referrals.

The American Academy of Pediatrics (AAP) provides a guideline on Promoting Healthy Weight in infants, children, and adolescents.

Head Start provides information for parents and teaching staff when planning adequate supports and adaptations for children with disabilities during mealtimes. Offering Support during Mealtime and Snacks

Friendships

Language and emotions develop synonymously and affect each other powerfully. Establishing friendships, forming relationships, and communicating with other children are, therefore, fundamental for learning and development. All children, including those with neurologic disorders, should have opportunities to play and interact with other children in school and to develop skills in managing emotions and behavior.

Friends, even in the toddler stage, can help children feel good about themselves. Friends help them adapt more easily to childcare settings and build self-confidence. Establishing friendships, however, can be a challenge for some children with special needs. Some do not have communication or social skills that allow them to form friendships, while others may have behavioral characteristics that prevent them from developing friendships. Children with autism, for example, may ignore the activities of others, choosing instead to carry out activities on their own.

Coping with bullying

Children with special needs are vulnerable to being labeled “different” in a negative way. Difficulty making friends may lead to isolation, making them easy targets. Some children may have difficulty telling caregivers they are being bullied or be reluctant to do so. Some could be easily hurt by things that others could shrug off. Some did not recognize that they were being bullied.

Suggestions to prevent bullying in schools have been put forward by Contact a Family:

Have a specific person your child can tell about the bullying and discrimination.

  • Have a safe place your child can go to during breaks or lunchtimes.
  • Create a signal your child can use with staff if the child feels that he/she needs to leave the room.
  • Make sure someone is responsible for the behavior of pupils beyond the school gate or on school transport.
  • Provide training for school and local authority staff.
  • Be aware of unstructured times, like lunchtime and breaks.
  • Remove the child who is exhibiting bullying, not the child who is being bullied.
  • Encourage communication between teaching staff and lunchtime supervisors.
  • Provide a safe area of the playground which has more supervision.
  • Allow children the opportunity to stay indoors at lunch and to have break times (e.g. clubs).
  • Provide support at times of transition.
  • Use the ‘Circle of Friends’ program, a structured initiative with six to eight volunteers.
  • Review the anti-bullying policy regularly and involve parents and pupils.
  • Work on social skills.
  • Give praise and encouragement.

Short breaks

Children and families can sometimes benefit from enjoying time with friends away from the routines of home. Taking a child away for a short break could provide opportunities for the child to spend time and play with other children. Having fun and performing everyday tasks alongside other children could be stimulating and promote learning. Parents and caregivers could also benefit from such a break as they can interact, share tasks and share experiences with other adults. Local authorities and the voluntary and community sector provide short breaks for families. These include overnight stays, day trips for groups of children, fun activities in the community and one-to-one support.

Source: National Children’s Bureau. Crown copyright. Information about neurological disorders.  http://www.ncb.org.uk/media/875206/earlysupportneurologicaldisorderspart1final.pdf