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How to Care for a Child with Special Needs After You Are Gone

We cover local resources you need and emotional support on how to handle children with special needs in case you can't be there forever.

“What Will Happen to My Child With Special Needs After I Am Gone?”

This is a common question that I have been asked many times working as a play therapist, an assistant psychologist and now a child psychologist in Malaysia. I remember the first time I was asked this question. I hesitated to give an answer because in actual fact, I was uncertain. I told parents not to worry and to keep trying. Feeling unsatisfied by my answer, I started to observe parents of children with special needs and what provides them with more ease about the future. There are two parts to answer this question.

Firstly, let’s be practical.

1. Person-centered planning

It is important to plan around the individual’s needs. Some questions that can be asked are:

  • What are the individual’s basic needs?
  • Is the individual able to go to university or work?
  • Are there financial resources available?
  • Who will manage the plan throughout the lifetime of the individual?
  • Is living at home a realistic option?

In answering these questions, make time to plan involving the family and your child as well as others who may play a significant role in the care of your child. It always seem less daunting to problem solve together as a family and take this question more systematically.

2. Consider the resources available in both the private and public sector

Having researched extensively for related services in Malaysia, I found many services catering to children but only a handful for adults. It is unfortunate that there is a lack of support and resources for adults with special needs. However, there is a growing sense of urgency in our community. Listed below are some resources available for parents with adults with special needs:

  • Malaysian Care provides adult services and job coach for individuals with learning difficulties
  • Helping Hands Therapy Services provides education and therapy to young adults with learning disabilities
  • Kiwanis Job Training Centre (KJTC) provides training to teenagers and young adults diagnosed with ‘persons with learning disabilities’
  • Pusat Latihan and Perindustrian dan Permulihan Orang Kurang Upaya Bangi provides vocational training to young adults and adults
  • SARC Wisma Harapan School, Sheltered Workshop and Vocational Training Centre serves adults with mental handicap
  • Salvation Army Malaysia also provides workshop training classes for young adults
  • Wisdom Home (Bandar Utama) serves young adults with special needs to learn daily living skills

Next, let’s get personal. Let’s address the essential issues that are on many parents’ minds.

Every child develops and progresses at a different pace and reacts differently to the variety of interventions. Here are some key things for parents of a child with special needs to always keep in mind:

1. Get help 

  • From the internet

    There are many interventions such as Applied Behavioral Analysis (ABA), floortime/Developmental Individual-difference Relationship (DIR), play therapy, speech and language therapy, occupational therapy to name a few. One of parents’ greatest resources is the internet. There are vast amount of information that you are able to research and look out for on your search engine. Although the Internet is a good place for information, it is wise to ensure that the information is from a reliable source. Websites such as www.autismspeaks.org and www.cdc.gov or other websites with an .org and .gov ending is a good place to start.

  • From professionals

    Find out about services that are available around your city/town and whom you are seeking help from. There are a variety of professionals with different specialties such as speech pathology, motor difficulties, social skills, CBT etc. Read up on your child’s medical/health professional’s background. It is important that he or she has the right qualifications and experience to practice. Ask questions. Ask about the best evidence based treatment that is the intervention that has the most research evidence to support its effectiveness.

Get help and get help early and you can start planning early for your child’s future. All the above resources can help you build a plan for your child. Remember, you are the ambassador of your child.

2. Get support

Dear parents, you are not alone. Although you are the main pillar of support for your child, you need to make time for yourself as well. Often times, parents find it useful to talk to another parent who faces a similar situation. A burden shared is half its load. Look out for support groups or speak with your child’s health professional. Make time for yourself to relax even though your situation may seem pressing and urgent. It is important to care for yourself so you can be more able to care for your child.  Reaching out would also mean learning from other parents and caregivers about different plans you can put into place for your child.

3. Don’t lose hope 

This is probably one of the most important but the most challenging task to do. I would really like to emphasize for parents to have hope. Every child is different and unique. They can achieve their best ability and full potential with the right amount of help. This has been illustrated many times around the world. I would like to inspire you with one story that inspired me while I was working as a play therapist.

Carly Fleischmann was one part of a set of twin girls, who experienced delays at 2 years old when compared to her twin sister. She was later diagnosed with severe autism. She was unable to talk, walk and appeared to be in her own world most of the time. Carly’s parents attempted all sorts of therapy and therapists to work closely with her.

Despite years in therapy, her progress was slow. She did not speak at 10 and psychologists thought that she had very low intelligence. What happened later was shocking. Carly began communicating by typing on the computer. At 11 years old, her life changed completely as did the world’s view on autism. At 20 this year, she has written a book and is in university. Her story has been featured on CNN, ABC news etc. I have included the video below to share her story and hopefully this will instill some hope in parents who has a child with special needs.

Planning for a future for a child with special needs is no easy feat. Believe it or not, you are not alone. There are a lot of parents out there who are facing the same challenges as you are. By acknowledging the situation and having proper preparation for the future is vital for your child. You won’t be able to accompany them forever and there will come a time when you will be leaving your child behind. Providing them with a proper system to not only survive, but to thrive will ensure that they will be able to carry on after you are gone. In the mean time, celebrate your child and their difference, create wonderful memories with them and maybe you can learn a thing or two from them along the way.

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