QUESTION: How can we provide physical and emotional support to parents in our community tasked with bringing up special needs children?
ANSWERS FROM PATCH PARENT COUNCIL
Dale Gregory: Parents of children with special needs will find that resources are not easy to uncover. Wading through myriad agencies in the Bay Area is difficult, and once you find an agency that handles your child's particular need, you may find they have a backlog of cases which puts you on that proverbial "wait list."
School resources are overwhelmed and often ability to get services is reserved for those who test on the "severe" spectrum. Getting an assessment takes perseverance from the parent(s) and even then it may be difficult to get a definitive diagnosis that directs parents to the correct resources.
Additionally, the child may benefit from services that are not entirely covered by insurance, such as cognitive behavior therapy or occupational therapy. Add to that the cost of respite care to give the parents a much-needed break and you begin to have a stressful financial situation.
The best scenario is when a parent can find another parent who is further along in the legwork and can share information with the family that is just beginning this arduous journey. Often parents form their own network groups to share information, give guidance and most importantly, offer encouragement to each other.
Often families fall apart under the pressures of caring for a child with severe disabilities. It is not surprising that there are many single, low-income mothers trying to care for children with special needs. In the best of circumstances the task is daunting. As with any developmental disability, early intervention is key.
However, sometimes parents are unaware of a problem. If parents notice something unusual, they may seek advice from their pediatrician, but many problems go undiagnosed because it requires daily observation over a long period of time and doctors only see their patients for brief visits.
And then there's the issue of parental denial. It is heartbreaking to think your precious 2 or 3-year-old might have a developmental problem. One of the best places to start gathering information is The Regional Center of The East Bay or RCEB. I'd love to see San Leandro start a resource center for families!
Yvonne Day-Rodriguez: I learned fast and early that we parents can be a fiercely judgmental group. Just think about the questions we ask each other in the baby's first year. Are we really just curious or are we hoping to confirm that we are making better choices than everyone else? Withholding judgment takes ongoing effort in a parenting culture so intertwined with worry and pressure.
I often think I understand what a parent is doing and why. It just takes learning a bit more about a family to learn my snap judgments are way off.
We can all stop and think before judging parents. Maybe their 10-year-old child is having a public tantrum or using a pacifier. Do you think they should control him or stop babying her?
I hope that next time I see a mom in the public women's bathroom with her 13-year-old son, she doesn't feel like she has to apologize and explain that her son has autism. I can only imagine that such a script repeated countless times throughout the day is wearing them both down.
If we work to create a culture of understanding, helpfulness and acceptance, all of us will benefit. Clearly, overwhelmed parents of children with disabilities need more than our empathy, but it's something we can all work on today.
Benny Lee: With respect to providing support for parents of special needs children in the community, there are a few things to consider. The first is opening your heart; it requires folks to have an even bigger heart and compassion for these parents as they have already committed their hearts more so than others.
The second is open communication; talking openly with the parents but with the respect of treating them as you would others.
The third is awareness; educating yourself so that you're aware of resource access and how others are helping.
The fourth is to be truly honest; parents of these special needs children have enough to deal with folks not being honest, which makes matters worse for them, so it's really our prerogative not to exacerbate their issues.
Lee Thomas: I had the pleasure of speaking with a San Francisco Unified School District teacher who works with children of special needs. During my conversation with Meghan McDonagh, she indicated several helpful tips for parents.
The first tip she advised for parents was to join a parent support group that had children is similar situations. McDonagh also said, “Parents must be patient and remember that any progress is great progress for their child.”
But one of the most interesting points of my conversation was when McDonagh mentioned the importance of using outside resources and providers who are trained to support the parent and the child. She mentions the importance of having meetings with every person that might be involved in the child’s life.
Overall this leads me to the conclusion that there are many services available for parents. The bigger question is, as a community and city are we doing everything in are means to advertise services for parents?
While I can’t image how difficult it must be as a parent of a child with special needs, I do know that no matter what the need is for your child, as a parent you should love and provide for them every day of their life. Children are special gifts and will always be special in their own way.
***NOTE: On April 5, the San Leandro Unified School District is hosting a workshop for parents and guardians of students with special needs. The topic will be "What's Next? Choices for High School and Beyond." The meeting will be held from 6:00 p.m. - 7:30 p.m. at the San Leandro Unified School District Office, 14735 Juniper St. Spanish translation, child care and light snacks will be provided.