Navigating the challenges of special-needs parenting

DR RADICA MAHASE

If you talk to any parent or caregiver of a child with autism, and children with other types of special needs, they will tell you that it is very challenging giving their children the level of care and the opportunities that they need to develop and thrive.

In most cases, it’s not because parents/caregivers don’t understand their children or are not trying hard enough, it is really because of the lack of support at a national level – an ill-prepared and ineffective education system; lack of public access to various therapies; and badly-structured public healthcare and social welfare systems.

Sadly, waiting for the government to express interest in the special needs population is like waiting for Santa to give away his reindeers. In the midst of it all, it is the special-needs population which is being denied opportunities for growth and development, and parents and caregivers find themselves in a situation where they have to raise their children with special needs without structures in place to support their children. Here are some ideas which can help parents and caregivers:

Building a support system – Many parents/caregivers are perpetually exhausted, especially those who are caring for their children 24/7. This is usually the case where children are not enrolled in educational institutions and one parent is required to stay home with the child. Or what about those parents who have full-time jobs and stretch themselves to drop/pick up from schools and therapy?

Parents/caregivers are physically and emotionally drained when the child is ill or having frequent meltdowns for whatever reason, and it is even more challenging when they have other children to take care of. Thus, it is very important to build a support system – members of the close and extended family, tutor, therapist, whoever is in the child’s close circle. While parents/caregivers are the ones who know the child best, they can help others to understand so that they can help.

Usually, one of the strongest support comes from siblings – both older and younger, once parents help them to understand and relate to the special-needs child. Having conversations with grandparents and aunts and uncles about the child’s special needs; allowing them opportunities to interact with the child and guiding them in that interaction can be the start to building a stronger, secure support system which might give parents some emotional support and much needed respite.

Making the best use of limited resources – probably the biggest challenge of raising a child with special needs in TT is the lack of equal access to resources, especially education and therapy. Many children with autism, cerebral palsy, etc, are not enrolled in public schools and parents struggle to afford expensive private schools and tutors.

Look around for free resources – there are multitudes of videos on all topics possible on YouTube and many apps that can be used to help build speech, develop reading and writing, amongst others. While you are waiting to get your child into a school or to afford therapy, you can use online resources to stimulate your child’s interest so that the days don’t go by without your child being engaged in some kind of developmental activity.

Depending on your child’s level of development, invest in educational items such as building block, puzzles and picture books that will help them to focus and get them interested in learning. If your child is in a school or attends therapy find out what you can do to support your child at home.

Empowering your child and yourself – a big part of coping on a daily basis is feeling a sense of empowerment, like you are ready and capable and that you are doing your best to help your child develop. Many parents/caregivers who focus on the challenges they are faced with daily, feel overwhelmed and depressed. Thus, it is important to focus on what you can do, while trying to figure out everything else.

At home you can work on potty training your child; on teaching him/her to dress and undress; to be self-sufficient – shower, make a sandwich, etc. Basic life skills require consistency and can be taught within the home environment by parents/caregivers who are always with their children.

As parents and caregivers, learn about your child so that you feel empowered. There are unlimited resources available online on every topic possible. International organisations such as the Centre for Disease Control and Prevention (USA) and the National Health Services (UK) provide information and free resources as well as links to other organisations.

The reality is that the challenges will not go away. As children grow older, when they become adults, there will be new challenges. The other reality is that change is excruciatingly slow at a national level and while we work towards getting government to show more interest in the special-needs population, we still need to do the best for our children. Parents and caregivers of special-needs children tend to demonstrate a level of superhuman that is truly needed if they are to keep moving forward. As we start another year, here are wishes for more opportunities, continued strength and physical and emotional well-being – Happy New Year!

Radica Mahase is the founder/director of Support Autism T&T