CHILDHOOD DISABILITY AND SUPPORT FOR PARENTS OF CHILDREN WITH DISABILITIES
A childhood disability may be present from birth or develop after birth. Disability is common - about one in 20 preschoolers and about one in 10 school age children have a disability. There are many types of disability, including disabilities that children are born with, disabilities that develop after birth and disabilities that are caused by injury. Children with a disability may have special needs and require early intervention and as much support as possible. Common disabilities such as autism, Down syndrome and intellectual and physical disabilities create challenges with thinking, behaviour and skill development.
Disability in childhood can have a lifelong impact on a person’s physical, mental and emotional health, as well as their social situation. Children with a disability may have special needs, particularly regarding health and education, and may need to negotiate significant social and environmental barriers in order to fully participate in everyday life.
A congenital disorder is a condition that is inherited, or caused by environmental factors, that is present from birth. Common congenital disorders include:
· intellectual disability – where a child is less able to think and develop new skills
· Down syndrome – a common genetic condition that causes intellectual disability
· cerebral palsy – a physical disability that makes it hard for a child to control how their body moves
· Fragile X syndrome – an inherited condition that causes intellectual disability and learning and behaviour problems.
Developed after birth
Some disabilities develop after birth. These include hearing problems, heart conditions, and blood, metabolism and hormone disorders. Detecting these problems soon after birth can prevent them from becoming more serious physical, intellectual, visual or auditory disabilities.
Autism is a disability that is known by the term ‘autism spectrum disorder’, which also includes Asperger’s syndrome. A reliable diagnosis of autism can be made in children younger than 2 years of age. Autism affects about 1 in 100 children. Although its causes are not fully understood, autism has been linked to genetic factors.
Caused by injury
Physical, mental and behavioural disabilities can occur after when a trauma or injury (such as falling from a height) affects the brain. Other causes of acquired brain injury include loss of oxygen (for example, asthma or after when almost drowning), infection (such as meningitis) and stroke.
Severe physical injuries, such as spinal cord injury or losing an arm or leg in an accident can cause physical disability.
Developmental delay or disability?
Developmental disabilities are different to developmental delays. A child with a developmental delay is developing skills more slowly than most other children. This does not mean they have a disability. Not all children develop at the same rate, so some children naturally take longer to develop than others. Developmental delays can be short or long-term and can happen in any area of your child’s development. In contrast, development is permanently delayed in children with developmental disabilities such as cerebral palsy, autism, language delay, hearing impairment and intellectual disability.
Various ways to Support Parents of Children with Disabilities
· Lending a Hand
Offer help with daily tasks. All parents need help sometimes, regardless of whether disability is a factor in their families. Parents of special needs children may not necessarily ask you for help – they may be ashamed or embarrassed, or they may just want to avoid putting you out. As someone who cares for them and wants to show your support, notice ways you can help and simply do those things.
-For example, if you're over at the parents' home and notice some dirty dishes in the sink, just start doing them. If the parents try to get you to stop, insist that it's your pleasure to help.
-You also might help with laundry or other household chores.
-If the parents have other children, you might give them a ride home from sports practices or after-school activities so the parents can get their child to a therapy or doctor's appointment. This can be particularly easy to do if you have children of similar ages who are involved in the same activities.
-Be prepared for some push back from the parents. They may be embarrassed, or think you view them as a charity case or as people who are unable to do what they need to do for their family. Tell them that isn't the case, that all families could use support sometimes, and that you're happy to do what you can to help them out. Respect their boundaries if they want to do particular tasks themselves, but push back when their "no" comes out of a desire to be polite, rather than a genuine wish to tackle something independently.
Everyone needs companionship and personal support, and parents of children with disabilities are no different. Due to their child's special needs, they may have limited availability or can only spend time with you during odd hours.
-Offer to take the parents out for coffee or other activities you know they enjoy. You also should be willing to come over to their house rather than going out in public, recognizing that they may be reluctant to leave their children at home.
-For example, if you know the mother loves vanilla lattes from a local café, you might pick one up for her and bring it to her at home.
-If you can't get away to go see them, have a phone date to catch up. You can even use Face Time or Skype to spend some quality time together. Also, understand that your friend may want to talk about their child, or not at all. Respect the conversation as they lay it out.
-Keep in mind that if you want to maintain a friendship and provide companionship to parents with disabled children, you must be willing to meet them on their terms most of the time. Expect the relationship to be somewhat one-sided, and to make a greater effort to come to them than they make to come to you.
· Volunteer to babysit.
As long as the parents trust you to care for their child, babysitting can give the parents a chance to do things on their own or to simply relax and have some time to themselves.
-Parents often have difficulty finding babysitters they trust to care for their child. They will be more likely to allow you to babysit if they know you understand their child's needs and how to keep the child safe and happy.
-Perhaps more important, special needs children may react with fear or discomfort to strangers. If the child knows and trusts you, they may feel more comfortable staying with you while their parents aren't around.
-Parents also may feel guilty about leaving their child or doing things on their own. They may worry about what might happen while they're gone. Reassure them that everything will be fine, and that spending time on their own will renew their spirit and motivation.
· Help the parents gather information.
Some parents are driven to conduct extensive research about their child's disability or diagnosis and the resources available locally. Others may not have the time or the motivation – especially if they have other kids at home.
-Ask the parents about specific areas where you might research, or if there are any topics on which they could use more information.
-You also may want to help them find information about support groups or local organizations that can provide assistance to their child.
-Don't push them to take particular actions or join a particular group, as they may fear that you'll judge them or look down on them if they don't follow your suggestion. Rather, look for more information on services that they express interest in.
-For example, the mom might mention that she'd be interested in joining a support group for parents of children with disabilities. You could say "That sounds like a good idea. I'd be happy to research the groups in our area so you can pick the best one more easily."
· Offer to take notes at meetings.
The lives of the parents of a special needs child are often filled with appointments to doctors, therapists, and other healthcare professionals. Going with them to these meetings allows them to focus on listening.
-At these meetings, parents are frequently inundated with information, and they may have difficulty processing it all at once. If they're trying to listen, apply the information to their child, and take notes at the same time, they may miss out on something important.
-You also can write down key words, bits of lingo, or other information they may want to research more in-depth after the meeting.
-Taking notes also frees the parents from worrying about remembering everything said to them, so they can focus on what is said and ask the questions they need to ask to fully understand what the doctor or therapist is saying about their child.
· Empathize with the parents. Empathy is one of the most powerful tools you can use to support parents of special needs children. The parents often have feelings of grief and loss of dreams and expectations, and they may feel guilty about these feelings.
· Stay away from saying "I'm sorry" or making similar comments, but be sure to validate their feelings. It may be essentially automatic for you to apologize, but this isn't what the parents need to hear. You have nothing to apologize for, and you'll better support the parents by accentuating the positive rather than acting like something terrible has happened to them.
· Ask if there is anything specific that offends or annoys them, so you can refrain from doing those things. For example, some people are deeply offended by "people-first" language, in which you describe their child as a "child with special needs" rather than a "special needs child." They prefer "identity-first" language, instead.
· Although the word is used in legal and social contexts, many people also dislike the word "disability," because it focuses on what the child can't do rather than what they can. Others prefer it to terms they find patronizing or condescending. The only real way to know is to ask about their personal preference, if they have one.
Acknowledge the parents' concerns. Parents with special needs children want to protect their child, and may have significant concerns about the future. As someone who cares for them, your role is to acknowledge those concerns and recognize them as valid.
-Avoid using dismissive language. If the parents mention something about their child, you may be inclined to say something like "oh, that's no big deal." However, for that child it may be a very big deal.
-Similarly, saying the child will grow out of it or be "better" when they're older will only show that you don't understand that child's diagnosis or how it affects their life.
-Instead, accept the parents' concerns at face value and acknowledge their validity. You might say "I understand that you're concerned about Jamie making friends in a new school. That's a valid concern. What can I do to help?" You can also say, “What are you thinking about doing about it?” to help them develop solutions.
Stay positive. Parents with disabled children often feel powerless to help their children and may believe they are not providing enough for their children or doing all that they can do. You can support the parents by reminding them of the good things and maintaining a positive outlook on the future. They need people to remind them that they are good parents, so when you see them doing something admirable, say so.
-Be there to celebrate with them on the good days, and on the bad days you can be the one to remind them of the good days and reassure them that there are many more good days ahead.
-At times you may not feel like being positive, but being optimistic (even if you have to fake it) encourages the parents and families to carry on.
-You do want to keep your optimism in check, though. Don't insist on a positive attitude at the expense of failing to acknowledge the parents' legitimate concerns. Saying things like "Oh, it'll be just fine. There's nothing to worry about!" can make the parents think you're being dismissive.
Avoid giving unsolicited advice. If you also have experience with disability, the parents may come to you with questions. However, if you don't have experience raising a special needs child you typically aren't going to have any advice that would be helpful.
-If you've been reading about the child's diagnosis or about parenting disabled children, you may find an article or website that you want to share with the parents. However, you shouldn't do this in a way that comes across like you are judging them, or criticizing their parenting skills.
-For example, if you read something that you think would benefit the parents; you might say "I read this article yesterday that reminded me of you as a parent. Would you like me to send you the link?" If they are interested, you can share it with them.
Educate yourself on disabilities and disability rights. Children with disabilities and their parents need allies who are willing to stand up for disability rights and help advocate for the disabled community in employment, school, and community contexts.[
-Read up on disability rights in your country, as well as the resources available locally. This will help you to recognize when there's a legal solution to a problem the parents are having.
-Understanding disability rights also gives you a way to support parents of special needs children by making others aware. For example, if your workplace isn't accessible, you might talk to your manager about making the necessary adjustments so it is accessible to all people. This helps not only the parents you know, but other parents and other people with disabilities.
-Parents of special needs children especially need help in the education context. The parents may feel that the child's school is not adequately addressing their child's needs, or that the child needs additional assistance. You may be able to point them to programs that would better serve their child.
Talk to the parents about their child. You can show support to simply by acknowledging the child and expressing an interest. Parents often welcome legitimate questions in an effort to better understand their child and their child's diagnosis.
-You can ask questions without judging, and parents will appreciate you acknowledging and taking an interest in their child. Too often, disabled children aren't mentioned – sometimes because people don't know what to say, or are afraid to ask questions and potentially offend the parents.
-Also, take an interest in their child outside of the child's disability. Know their birthday, learn their favourite things, celebrate their milestones, etc.
-Parents with special needs children typically are happy to talk about their child and explain different aspects of the child's personality or behaviour. Having these conversations not only shows support for the parents, but helps you better understand the child.
Speak out against discrimination. Children with disabilities often face tremendous prejudice and stigma because they are different from "normal" kids. Combating discrimination when you see it is a way to advocate for the child and show your support for their parents.
-As you read more about disability rights, you'll start to realize that for many people, words and phrases such as "retard" or "riding the short bus" are deeply insulting and offensive. When you hear others using these words or phrases, call them out on it.
-If you see someone with special needs being bullied or insulted, you have an opportunity to stand up for their rights and help them.
Stopping discrimination when you see it helps to make the world a more welcoming place for all children.
Assist with fundraisers or awareness events. Connect with a state or national disability rights organization, or with a non-profit. Not only can you donate, but you can work as a volunteer to help spread the word about disability rights.
-You don't need to be disabled yourself, or be the parent of a special needs child, to join these organizations and work with them.
-Awareness and advocacy organizations also can be a good way for you to participate in activities along with the parents and their children.
-Make sure you research non-governmental organizations before joining or donating. You want to understand their goals and make sure you agree with those goals. Ideally, people with disabilities should hold prominent positions, or at least have a strong voice, within the organization. Stay away from organizations that claim to help people with a particular diagnosis or disability, but don't engage those people in their activities or their decision-making process.
For any parent, finding out that their child has a disability can be hard to come to terms with. However, coping is possible if they seek help to manage their emotions and work towards accepting the situation. It is important for a parent to have knowledge of the disability their child has and also understand their needs. A social worker can provide emotional support for parents. A social worker is a person to talk to; someone who will listen and give parents an opportunity to talk about their feelings, challenges and life experiences. Having children can be stressful and having a child with a delay or disability can add additional challenges. A social worker will listen to a family’s unique concerns and work on a plan for services and assistance that best fits their situation.
1. Advice on Parenting Children with Disabilities
2. What is Childhood Disability? | Pregnancy, Birth and Baby
3. Ways to Support parents of Children with Disabilities- WikiHow
4. Helping the Helpers: Supporting Parents of Children with Disabilities