Community Activities

Community activities can include all children. Examples include Boy and Girl Scouts, reading time at the public library, park programs, faith-base activities, and the YMCA and YWCA.

How does your child participate in community activities? What do you do, as a parent, to help make it work?

Your Thoughts

Sometimes a good quote can give hope or a new perspective. For example parent advocate manager Virginia Richardson values the quote she heard once, “You cannot hurry the river” (source unknown).  She says, “It reminds me that I need to enjoy my child and know that everything is not about a projected outcome that is totally dependent on how hard I work at it.”

Do you have a quote that has been helpful in parenting your child with a disability?

Child / Person first language

You’ve probably heard these words: impaired, handicapped, retarded, suffers from ___, crippled, etc. We want everyone to remember that children or adults with disabilities are like everyone else—except they happen to have a disability.

How have you learned to handle comments that degrade persons with disabilities? What do you say in response?

Love

Advocates at PACER are also parents of children with disabilities ourselves. We know the joys and stresses of raising all of our children, those with and those without disabilities. But focusing on the stressful part of it for a minute, one of the advocates told her husband, “The hardest kid to love is the kid that needs the love the most.”

Wow! What do you think? What has been your experience?

Fathers

When the world talks about rearing children, the tone is decidedly feminine. Despite the growing number of fathers in traditional or single parent families who participate in caring for children, resources and support specifically focusing on fathers are often missing. It is especially true for fathers of children with disabilities.

As PACER advocates, we also find that fewer fathers than mothers participate in IEP planning. Yet one father told us, “It is hard to explain, but there is a different dynamic when the father comes to the IEP meeting.”

What ideas can you share to support the involvement of fathers of children with disabilities as they help raise their child and advocate for him or her?

Holidays

Holidays will soon be here. Family get-togethers and celebrations in community places can be lots of fun – but sometimes also a big headache, even heartache, for families of children with disabilities. Sometimes it’s hard to know how much we can realistically expect our child to participate or behave in these situations. It can also be hard to know how much to expect from our extended family members and members of the community at large. 

What have you learned from your experiences at family or community get-togethers that might be helpful to other families?

PACER Center recognizes that a grandparent's life is impacted by the birth of a child with a disability. Grandparents can influence a family's adjustment. They are often called upon to provide support to the entire family. A Minnesota grandparent of a child with a disability told PACER at a Grandparent to Grandparent meeting, "I was overjoyed to walk into a room of people who understood how I felt without explanation. No one knows as well as someone who's been there."

What are some ways grandparents of a child with a disability be involved and helpful? What are your experiences? 

Parents of children with disabilities often need to advocate for services for their children. Advocacy is simply speaking up to make things better for yourself and others.

               What effective advocacy tips could you share with other parents?

A parent recently told a PACER advocate, “I get so frustrated! Being a ‘good communicator’ doesn’t come naturally to me!”  As an advocate for her own children with disabilities, PACER Advocate Carolyn Anderson said she felt the same way. “I had to ‘act as if’ I could do this long before it felt even a little natural for me.”

               What has helped you learn to be a “good communicator”? 

Sharing ideas means working with others to try to find a solution to a problem. All team members are encouraged to participate. They share ideas without evaluating or judging them first. Once the ideas are on the table, the team chooses a solution to try. A written plan is developed that includes who is responsible for each task, as well as a follow-up plan and a timeline.

               What creative solutions has your team reached through sharing ideas?