For many parents, the idea that your child may be developmentally delayed can be particularly unsettling. You may notice that your child is not meeting milestones as quickly as other children, or that they engage in unusual behaviour beyond the anticipated childhood 'growing pains'. But what should you do next?
When your instinct tells you that things are not going the way they should, be guided by it. While a million questions may run through your mind, following these steps should result in a smoother journey through the assessment and/or diagnosis process:
1. Talk to anyone who helps you care for your child:
A teacher, nanny, carer or grandparent. Check whether they have any concerns about your child’s development.
2. Document your concerns:
Make a list of specific observations that you believe are a cause for concern. It will be easier for you to discuss these concerns once they are written down, and you won’t have to worry about forgetting any key areas you want to discuss with your paediatrician.
3. See your child’s paediatrician:
Paediatricians are not only there for when your child is feeling sick. Healthcare providers are also there to assist you with tracking your child’s development. Discuss your concerns with them so that an action plan can be developed. These are individuals who see children on a daily basis and are familiar with what the range of normal development looks like. Allow them to assist you in this process with securing the appropriate referrals and to ease any concerns you may have.
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Paediatricians in the Cayman Islands
4. Follow through with referrals:
Your paediatrician may recommend that your child see one or more service providers on-Island. Please do not wait! Proceed with making the necessary appointments for your child based on your paediatrician’s recommendations. Keep in mind that for some services, there may be a short waiting period between when the appointment is made and when your child is seen.
5. Report back to your paediatrician:
After following through with your child’s referrals, forward any results to your child’s paediatrician. Not only will they be able to decipher technical aspects of the report, but they can also make subsequent referrals for any therapy that is required. Many insurance companies will not cover services without a physician’s referral, so your paediatrician is as an integral part of your team.
If your child is under the age of five, consider enroling them in the Cayman Islands Early Intervention Programme (EIP). This free programme involves a group of highly qualified and compassionate early childhood teachers and therapists who specialise in assessing your child’s overall development and providing additional support and services if your child demonstrates a need for them. Their goal is to prepare your child for school.
Additionally, parents may seek support through the Health Services Authority (HSA) or through one of the Paediatric Therapy Services providers on-Island. Scroll to the bottom of the page for a full list of providers.
School Age Children
If your child is over the age of five or enroled in school, seek school-based guidance. For children already enroled in primary or secondary school, the process for getting help varies based on the school. Most public and private schools have a Special Educational Needs Coordinator (SENCo), or an equivalent position. Discuss your concerns regarding your child’s classroom teacher and the SENCo for your child’s school. The SENCo will coordinate a meeting with all of the parties so that they can discuss all concerns and assist you with getting the necessary referrals.
For children who attend government schools, many services such as Speech and Language Therapy, Occupational Therapy, Music Therapy and Education Psychology are offered within the school system. For children who attend private schools, parents may need to seek support through the HSA or through one of the Paediatric Therapy Services providers on-Island. Scroll to the bottom of the page for a full list of providers.
Ask for an Individualised Education Plan
This is a plan that outlines in writing what services will be provided to your child and what accommodations can be offered to him or her in an academic setting. It also includes short-term and long-term goals that your child’s therapy team and teachers will focus on. Establishing an Individualised Education Plan (IEP) will assist your child’s therapy team with planning and implementing goals that will enhance your child’s academic success. IEPs are often written by a school’s SENCo (or equivalent) in consultation with all stakeholders included. As a result, it encourages an open dialogue between you, your child’s teacher and your child’s service providers. IEPs are updated annually, however, these can be updated more or less frequently, depending on your child’s unique academic needs.
If your child has been diagnosed with a delay or disorder, it can be overwhelming. As a parent, it is very natural for you to go through periods of grief, denial, sadness, anger or anxiety as you try to wrap your head around their diagnosis and navigate the way forward. Seeking support from other parents who have gone through similar experiences can help you come to terms with your child’s diagnosis. Additionally, there are nonprofit agencies on-Island, such as Inclusion Cayman, that are available as a resource to families to provide access to training, guidance and general support as you and your family go through this difficult period. Remember that any diagnosis does not and should not change who your child is to you. As you go through the therapy process, take time to appreciate the small gains your child will make. The small changes eventually add up to greater transformations over time – and these are worthy of celebration – no matter how small!
Different Types of Diagnoses
Autism Spectrum Disorder
Autism Spectrum Disorder (often abbreviated to ASD) is a multifaceted neurological disorder that affects communication, cognition and social skills. It is usually noticeable prior to three years of age. It is an umbrella term that is used to describe a wide range of behaviours and abilities, hence the reason it is referred to as a 'spectrum' disorder. There are several 'red flag' characteristics across three domains that provide strong indicators that ASD may be present.
- Does not respond to his or her name
- Seems to hear sometimes, but not other times
- Used to say a few words or babble, but now does not
- May engage in 'echolalia' or repetition of words or phrases heard in conversation or from other sources (toys/television etc.) but no functional communication is initiated
- Displays poor eye contact
- Lack of warm, joyful expressions
- Seems to be in his or her 'own world'
- Is not interested in interacting with other children or people
- Does not like to play social interaction games like 'peek-aboo'
- Repetitive movements with objects or repetitive verbalisations
- Odd movements or posturing of body, arms, hands or fingers (such as hand flapping, rocking etc.)
- Plays with toys unusually (i.e. only playing with a small part of the toy, like the wheel of a car, or lining toys up instead of playing with them)
A diagnosis of autism is usually made by a developmental paediatrician or a clinical psychologist. Obtaining a diagnosis often involves a multidisciplinary team of therapists, such as speech language pathologists and occupational therapists who evaluate and treat children with ASD.
Attention Deficit Hyperactive Disorder
Attention Deficit Hyperactive Disorder (ADHD) is a common childhood disorder of the brain that affects a person's ability to pay attention and concentrate on tasks. This neurological disorder is characterised by delayed frontal lobe development, which impacts a child's ability to attend to tasks, stay organised, manage impulsive behaviours and follow through with instructions. According to the CDC, ADHD is three times more likely to occur in boys than girls. There are three types of ADHD – Inattentive, Hyperactive-Impulsive and Combined. Here are the red flags:
- Easily distracted by noises and activities around them, i.e. looking around frequently and sporadically
- Often found to be 'daydreaming'
- Difficulties with staying focused on one task or activity
- Difficulties with remembering instructions
- Difficulties paying attention to detail
- Difficulties with organising belongings and tasks
- Always engaging in movement
- Fidgeting when asked to sit still
- Difficulties with remaining seated
- Often stands instead of sitting at a table
- Often touching objects
- Excessive talking, often during inappropriate times
- Difficulties with taking turns
- Difficulties with standing in line
- Impulsive behaviour or decisions
- Characteristics from both the Inattentive type and Hyperactive-Impulsivity type are observed
ADHD is usually diagnosed by a psychologist, but treatment of the disorder may include the guidance and care of a psychiatrist. Diet, environmental changes, therapy and medication are all methods used to treat ADHD. Families usually work closely with their child’s paediatrician to monitor a child’s response to treatment methods.
Learning disabilities are neurologically-based processing difficulties which interfere with the development of executive functioning skills and impact the ability to learn basic skills such as reading, maths and writing. Children with a learning disability typically have difficulties with learning new tasks, remembering and recalling key pieces of information, answering questions appropriately, telling time, and often mix up the order of information (for e.g. mixing up letters during spelling or mixing up a story's plot). These disorders can include: auditory processing disorders, dyspraxia, dyslexia, dysgraphia, dyscalculia, non-verbal learning disorders, visual motor/visual processing disorders.
Communication (Speech & Language) Disorders
The American Speech Hearing Association describes a language disorder as when a person has difficulties understanding others (i.e. receptive language), or sharing thoughts, ideas and feelings completely (i.e. expressive language) or a combination of the two. Typically, children with language disorders have difficulties with expressing themselves clearly and fluently.
Many types of communication disorders fall under the diagnosis of a 'Language Disorder' including:
- Preschool Language Deficits (typically this is seen as a language delay, which is the result of atypical language acquisition)
- Language-Based Learning Disabilities (these typically involve learning disabilities that affect a child’s ability to develop reading, writing and spelling skills)
- Selective Mutism
- Cognitive Deficits (where cognitive challenges affect language acquisition and development)
- Executive Functioning Deficits (where metalinguistic skills such as organisation, attention and self-regulation are delayed)
Many parents are cautious and scared about having their child ‘labelled’ or classified as having a delay or disorder. The fear that a child with different learning needs will be ostracised by their schools, educators, peers and by society in general is a very real one that many parents struggle with on a daily basis. However, in most cases, having a diagnosis is beneficial to the child and entitles them to a myriad of services, classroom support and educational accommodations which, ultimately, will help them succeed.
Inclusion Cayman is a non-profit independent organisation that supports families across the Cayman Islands to promote and defend the rights and interests of people with learning difficulties. They work with schools, educators, families, providers and policy makers to further the inclusion of individuals in all aspects of the community.