Ways Emotionally Supporting Special Needs Parents Leads to Success
There is an endless array of articles, advice and information on the internet about autism and its impact on families. Much of the available information includes costs of raising a child with autism. Many articles are geared towards parent experiences with applied behavior analysis (ABA) therapy, speech, and occupational therapy (OT), while other online information focuses on the professionals who assist with diagnoses and intervention.
Blogs commonly offer advice or creative ideas for families living with autism, while autism websites include information on autism research or how to get involved with their organization. Parental emotional support is often reduced to a link within a blog that redirects parents to community-sponsored groups or to professionals in the industry. Much less information is available for parents who require additional emotional support throughout their autism journey.
Parent Training and ABA
Parent Training is often synonymous with ABA therapy. Training for parents is grounded in the principles of applied behavior analysis, and is designed to educate parents on how to effectively observe, participate and facilitate everyday activities with their child, from homework to self-help. Parents are often required to take part in parent training programs as part of their child’s 1:1 home therapy and family members are encouraged to participate in scheduled meetings. Many of these requirements are included in contracts in which parents must sign.
The downside of traditional parent training programs is that they are intensive and skills-based, which may leave parents feeling frustrated, hopeless, confused, angry or sad. It’s not uncommon for parents to become disillusioned with therapy, medical appointments, IEPs, and the insurance costs associated with an autism diagnosis. Often the process itself can be overwhelming and without emotional support, parents may feel like giving up. More concerning, is that some organizations implement signed parental contracts, which outline specific requirements of parents as part of their child’s continued therapy and reporting standards.
With the emphasis on the child, parents often get overlooked. Advocating for parents is critical to ensure that their emotional and psychological needs are heard and respected. Parents who have a child with special needs will often go through a gamut of emotions ranging from denial, anger, depression, guilt and ultimately, acceptance. Here are some ways to assist parents with emotional support:
Let them mourn
I’ve worked with hundreds of families over the years and one of the common similarities is that parents will cry. They may cry when their child is having a meltdown. They may cry when their child reaches a milestone with a newly learned skill. Or they may cry when frustrations are high regarding insurance bills, doctor’s appointments or parent training requirements. Or, they may cry for the sake of crying. Allowing parents and family members the opportunity to release their emotions assists them in healing and coping. Listen to them; hear their perspective. Allow parents time to vent and express their concerns, and work together with them in reaching common goals. This philosophy allows for a human connection and is essential for creating empathy and trust with families.
Parents know their child best and are excellent in providing guidance and support for staff. For example, I worked with a family who taught me that the “blue bowl” was stored in the cupboard, and showed me where it was kept. My client only used the blue bowl for eating, so knowing this bit of information was germane to her self-help program and helped empower me in training my staff. Similarly, in collaborating with parents, it allows professionals to gauge when parents need a break, or when to modify parent goals.
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Let Parents Feel Heard
Goalsetting and data collection are fine for analysis, however, human beings need to feel heard. Parents of special needs children often deal with unlimited listening: to Behavior Analysts, to doctors, to special education teachers, to occupational therapists, neurologists, speech pathologists and clinicians, just to name a few. Parents may feel bombarded with updates, progress reports, billing, or additional paperwork needed to secure or maintain benefits. In my practice, I’ve taken a philosophy of collaboration, which includes letting parents feel valued and heard. They are the backbone of their child’s program, and as such, their input is priceless. If parents offer advice or suggestions, listen.
Offer Local Referrals for Families
Unfortunately, divorce rates are exceptionally high for families with a special needs child. Parental stress and depression are very common for these families, and the strain of taking their child to appointments, or having therapists in their home limits quality time families have. Providing referrals to trusted psychologists, therapists, or community liaisons is important for parents and siblings living with the reality of autism.
Get Out; Get Active
More often than not, home therapy includes community outings. This is a time to work on the child’s skills in their neighborhood or community, but also provides respite for mom and dad. Going to a park or nature trail is excellent therapy for parents. Sometimes, a change of scenery helps put things in better perspective for parents, allows for them to unwind, and can open communication and collaboration between parents and staff.
Aside from the ABA goals required of parents, providing emotional support is an excellent way to build rapport and trust with parents, but also allows them a voice in the process. Allow parents to express how they are feeling about goals, their child’s progress, or what is required of them in sessions. Get a feel for their perspective, and work collectively to meet both formal parent training goals and their emotional needs.
Sometimes, the best therapy is our own written thoughts. Encouraging parents to jot down their thoughts and feelings can be imperative for their own healing, but also may provide insight or suggestions to their child’s intervention program. I worked with one parent who used journaling as a way to decompress at night before bed. She would write down everything that occurred that day. After a while, she began using this method to share her feelings and also to provide suggestions on her son’s sessions. Her journaling helped her release her feelings, and assisted her in finding her own voice in self-empowerment.
De Paz, N., & Wallander, J. L. (2017). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review. Clinical Psychology
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Hartley, S., Barker, E. T., Seltzer, M. M., Floyd., F., Greenberg, J., Orsmond, G…(2010). The relative risk and timing of divorce in families of children with an autism spectrum diagnosis. Journal of Family Psychology, 24(4), 449-457.
This article was featured in Issue 80 – Conquering Challenges With ASD