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Patch Parents on Supporting Parents of Children with Disabilities

This week we asked our Patch Parents Council how they thought we as a community could support parents raising children with developmental disabilities.

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.  

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***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. 

Leah Hall March 18, 2011 at 01:04 AM
Thank you, Patch and parents for a thoughtful group of responses. Dale, you sound like you've helped many navigate the ropes and have a real first hand understanding for how devastatingly difficult it can be caring for a child with disabilities throughout most of our country. In light of last weeks tragedy in San Leandro, I wanted to share some additional information. If you know of someone who seems to be having difficulty, our city has a number to call that is designed as a comprehensive social service resource information for Alameda County, contact Eden Information & Referral Resource Finder. Dial 2-1-1 24 hours a day/7 days a week In Multiple Languages/TTY. I understand that Patch will be posting an article later this week which will talk more about this vital series of services, some of them integrated, to address multiple needs.
Marga Lacabe March 18, 2011 at 06:02 AM
Here are some practical advice on how as a community we can actually help children with disabilities and their parents. This advice is actually based on my experience growing up with a chronically/supposedly terminally ill sister, but I think it should apply to disabled kids as well. For the children: - Treat these children like anyone else, don't pity them or coddle them or hold them to different rules/standards than non-disabled children. Of course, be patient with them and maintain realistic expectations, but think about the long term inter-personal skills these children will need to develop in order to live as independently as possible as adults. - Mentor them or become big brother/sisters to one of them, take them out of the house for some fun outing or just spend time listening to them (keeping my first point in mind). Focus on anything that makes them unique/interesting that is not related to their disability. - Disabled children can be isolated, help them build communities that are more inclusive. For the parents: - Be understanding, willing to listen to parents explain their frustrations, their feelings of being overwhelmed, etc. Parents need to feel safe to let it all out. Don't expect parents of disabled kids to be superhuman. Some may be, but not all. - Be encouraging but not unrealistic. If the kid has a condition that is not likely to get better, don't say "he will". Offer prayer if they're religious, but not if they're not....
Marga Lacabe March 18, 2011 at 06:12 AM
- Offer to babysit the kid to give the parents a break. This may mean having to learn special skills, so don't do it lightly. Insist that you are willing to do it and show that you'll do it responsibly. - Help parents finding resources in the community that will help them, but don't overwhelm them with unfiltered information. - Include them in outings, arrange babysitting for the kids if necessary. - Offer to mentor/help their other children. It's incredibly hard to grow up with an ill/disabled sibling, as parents often do not have time for the ones that are well (my mother used to compare us to the fingers in her hand, they all mean the same to a person but if one is broken, that's the one she has to tend to, but healthy fingers don't need attention, healthy children do). Parents can feel less stressed, if they know there is someone helping tend to the emotional needs of their other kids. Of course, these are just general things and won't apply to every situation. My experience is that families with ill children can get pretty isolated without even noticing, and I imagine it's the same case when there are disabled kids.
martha March 18, 2011 at 03:42 PM
As a parent with a child with special needs I can say isolation is probably the biggest issue. It takes an incredible amount of time and energy to care for children with special needs. That's always the priority. So connecting with other adults, arranging play dates etc. can just get lost in the shuffle. The best thing anyone can do, anytime, anyplace, is just be friendly. I consider it a really great day when my daughter and I are out and about and one or two people make the effort to come say hello, touch my daughter's hand, or open a door for us. Connecting with children with disabilities can seem unnerving. But just treating the child as you would any other is all it takes. If the child is non-verbal then just look for an eye gaze or a little sound as your response to "hello." And a BIG SHOUT OUT to Patch for being so proactive and responsible in reporting not just the news, but how it impacts us all as a community.
Dale Gregory March 18, 2011 at 11:37 PM
Martha, Thank you for suggesting such a wonderfully simple application that any of us can put into action. I hope I have an opportunity to give a parent a "really great day" when I'm out and about. Thank you for sharing such a personal perspective!
Leah Hall March 19, 2011 at 01:55 AM
Hear, hear!

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