Autism and special needs in general is a very difficult situation most families find themselves in, when they have their children diagnosed. Understanding the problem and accepting the unexpected in itself is another traumatic experience for most families. Depending on the parent’s geographical location, getting the right information, and the best support system becomes another journey on its own. Every parent has a story to tell when it comes to finding the best therapy programme for their special needs child. It’s really a complex situation and making an informed decision, which includes: the approach/programme, the location, the therapist, and most importantly the cost involved.
You are bombarded with different programs that make it difficult to decide which one best fits your child. Sometimes, recommendations and experiences from other parents may negatively or positively influence your decision and the kind of programme to access. However, regardless of whatever level of the programme you sign up for, there’s one important requirement that can never be over emphasised, and that is the parent involvement.
“My child is my everything, so I will give everything, and stop at nothing“, -Dr. Temple Grandin
Quite often some parents are determined to be at the centre of it all, but it can be emotionally demanding when one has to work with his/her own child.
No matter how good the therapist is, the best therapist has always been the parent. Parents play a crucial role in supporting autism therapy for their children.
Here are some reasons why their support is essential:
First of all, autism therapy often requires consistent repetition of specific techniques or interventions. Parents who actively participate in therapy sessions can continue these techniques at home, ensuring consistency in the child’s routine and enhancing the effectiveness of the therapy. Some parents have the notion and expectation that the therapist does everything because that’s what they are paid to do. It’s important that parents augment what the programme offers to ensure consistency, especially, when the contact hours are below the acceptable threshold. There are different levels at which parents can get involved: these are through video recorded sessions, daily report feedback from the therapy sessions and some follow up assignments for parents to do with the child.
The challenge for today’s parent is finding the balance between stressful work demands and keeping up with the child’s program. Whichever way you look at it, caregivers should prioritise their time and also get all other household members involved through a committed structured timetable. This is a journey for the entire family. Siblings and other extended family support will go a long way to significantly reduce the burden on the parent thereby escalating the progress. My experience with families with more than one special needs child can be very depressing.
Generalisation for children with autism is key. Autism therapy aims to improve a child’s skills and behaviours across different environments. Parents who support therapy by practising learned strategies at home allow the child to generalise the skills they learn in therapy to real-life situations. This helps the child make progress in various settings and situations.
During therapy, positive reinforcement is usually used to motivate and encourage desired behaviour. Parents who are involved in therapy can also reinforce positive behaviours outside of the therapy sessions, which can enhance the child’s learning and increase the chances of the behaviour being repeated. It’s important for therapists to include home settings in their programmes especially those who visit therapy centres or schools. A comprehensive structured programme can include social settings to ensure that the child demonstrates these skills across different locations.
Any program that is not embedded with effective communication and collaboration can never see the light of day no matter how best the programme may be. Regular communication between parents and therapists allows for effective collaboration in creating and following a personalised treatment plan for the child. This communication ensures that parents are aware of the goals, progress, and any challenges faced during therapy. It also allows them to provide input, express concerns, and work together with therapists in overcoming obstacles or adjusting interventions as needed. Having a periodic meeting provides the forum to openly discuss progress and concerns from both parties.
There are some silent areas that some programmes do not really take cognisance of, that is, the emotional support for both parents and the child. When parents’ emotional and psychological needs are well taken care of, the caregiver will be in a better position to provide the same to the child. Most therapists are not well equipped to provide psychological and emotional support to the parents. Engaging a clinical psychologist as part of the program will help parents to manage their stressors better so they can take care of their children. Parents who actively participate in autism therapy provide emotional support to their children. They often serve as the primary source of comfort, encouragement, and reassurance during therapy programs and throughout the child’s overall development. This support helps build a trusting relationship, making the child more receptive to therapy techniques and interventions.
Autism therapy can be time-consuming and challenging for both the child and the parents. Parental support ensures that the child receives regular therapy sessions and feels valued and supported throughout the process.
Additionally, parents who actively engage in therapy often have access to resources, information, and support networks that can positively impact their own well-being. Respite care, parents’ support groups and other socialisation programs help a great deal to balance the stress for both parents and the child. Taking care of the special needs child can be overwhelming especially, having more than one child with severe needs. Most parents feel rejected and feel like social outcasts. They hardly have enough time for themselves and equally find it difficult to attend social gatherings because of their children. Some parents may avoid friends and families visiting because of the circumstances they find themselves in.
Parents’ support and active involvement in their child’s autism therapy are crucial for ensuring consistency, generalisation, reinforcement, communication, emotional support, and overall well-being. Their support significantly enhances the effectiveness and success of the therapy, leading to better outcomes for the child with autism. Parents also need a lot of external support: physical, structural, and emotional support to be able to carry this obligation to the best of their abilities.
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