Every month features an awareness day for different special needs. World Down Syndrome Day in March, National Spina Bifida Awareness in October, and Autism Awareness in April. These are just a few of the many special needs that families are dealing with each day. It’s hard to know what a special needs family goes through unless you are one. So, we’ve asked one family to tell us how it really is and what can make families with special needs feel supported and included in the general community.
By Diana Blank Epstein and David Epstein
It is on ongoing struggle for families with special needs children to find acceptance, understanding and inclusion in the wider community and, as a result, families can experience isolation and alienation, which only adds to their sense of despair and grief about having a child with challenges.
Yet, there is much that people can do to support and include special needs families. We believe that many do want to reach out and include individuals with disabilities but just don’t know what to say or how to interact.
Based on our own personal experience, our “special” friends, and what we hear in the local autism community, here are some helpful guidelines to enrich all of our interactions.
Just making an effort to acknowledge the special needs child (rather than avoiding the child/family) and some interactive attempts at engaging the child, go a long way in making the family feel like a part of the community. It can be as simple as smiling at the child, greeting the child, giving a high five and making a positive comment about the child.Special needs families are particularly sensitive about negative comments which can easily put a parent in defense mode. Best to keep in mind that these are children and parents who are under very different stressors than the typical family and are generally working double time to help their child overcome multiple challenges.
- Try asking neutral questions which show genuine interest in the child and are seen as supportive (ie: Where is your child going to school?, What activities does he like? What do you need to feel comfortable and accommodated here?).
Normalizing a special needs child’s behaviors is comforting for parents and really facilitates the inclusion process. For example, last summer at Camp Keff it was reassuring for me to hear camp counselors say “all the kids get loud at camp….Joshua fits right in.” Sometimes community members will remark on what they do to meet their own sensory needs, validating that we all have habits we engage in to calm ourselves (ie: Joshua uses an attachable chewy for oral sensory needs, while others chew gum to meet their oral needs or to calm themselves).
- Just normalizing that we all have good days and bad days and that we all struggle, at some level, in expressing our needs and wants. The simple act of not reacting when a child with special needs acts differently or may be having a meltdown is very helpful (ie: our son Joshua has a sensory need involving tapping on objects. We feel supported when people understand this need and let it be “no big deal”, while we make efforts to redirect him, take him somewhere else if it gets too loud, or just let him engage in this behavior if it not disruptive in that particular setting).
Although perhaps well meaning, we appreciate when people steer clear of questions that make the families feel that they are being evaluated. We already are evaluated so much by school districts and insurance companies. We just want to “be” when we are in the community. For example, asking “how bad is your child’s condition” or “where is your child on the spectrum?”, puts us in a position where the focus is on the child’s impairments and disability, rather than the child as a human being first.
- Instead, try asking about the child’s likes and dislikes and what we enjoy doing as a family unit. If anything, comment on the special needs child’s positive qualities and acheivements.
And, while we know people are trying to be compassionate, most of us find pity comments unsupportive. Comments such as “I can’t imagine what your life is like,” “We thought we had issues with our kids” and “I’m so sorry that this happened to your family” are taken as derogatory towards the child, hurtful to the family, and create a situation where a family experiences a greater sense of exclusion.
- What can be helpful is to ask if a family needs personal space or needs extra assistance, when their child with special needs is having a tough time behaviorally in the community. Everyone has different needs and communicating with the family about what particular needs and accommodations are supportive for that specific family, can really help a family feel supported by their community.
As a rule, use the “person first philosophy” for people with any disability. Put the person first, before the disability. Try to see our children as representing neurodiversity (human variance). Like anyone, all we hope for is our children and families feeling accepted and respected for who they are and who they are becoming. Come as you are! Our strength is in our diversity afterall.
Diana Blank Epstein is an LCSW who works as a clinical supervisor and is on staff at JFCS, where one of her roles is developing and teaching special-need workshops for parents. David Epstein is a Software Quality Assurance Engineer who has worked for a variety of companies in Silicon Valley. Diana and David have two adorable children, Rachel and Joshua. Rachel has entered the 5th grade in a Montessori program. Joshua has entered the 3rd grade in a special day class. They are both well-adjusted and happy children, who are loved and accepted for who they are.