The News Tribune logo

Tuesday, November 18, 2008

We Are Not Alone

The tea that I purchase has little sayings and nuggets of wisdom on the little piece of paper that attaches to the string that holds the tea bag. After a recent and brutally stressful day, as I was attempting to relax with my cup of tea, I noticed the paper tag and it said this: “Recognize that you are the truth.” It was in that split second, in my solitude, that I said the words out loud to myself for the first time ever.

“I am the parent of a learning disabled child.”

The words aren’t easy to say because this truth can hurt. My son has been subjected to human cruelty and misunderstanding. As his parent, I’ve endured stares, pity, been the subject of gossip, and criticized. And the amount of personal and familial stress can be extreme. Yet this truth also brings out the best of humanity with kindness, caring, patience, and acceptance; and this is where the organization Pierce County Parent to Parent has given me more truth to my parental and personal life.

Pierce County Parent to Parent is a non-profit organization and is a program of Washington PAVE (Parents Are Vital in Education). The organization provides emotional support and information for parents who have a child with disabilities or a chronic health need. Personal support from another organization trained volunteer parent who has a child with similar needs is beyond a blessing. My parent helper was kind, supportive, interested, and wealth of information. Most of all though, she just “gets it.” Singing to the choir is a beautiful song indeed, especially when you feel like a lonely soloist who is wandering about aimlessly to find a group to make sense of the music. Through my phone conversations, an excellent packet of written and online information/support groups to help parents grieve, accept, and cope, and the hope of other events to come (like this Thursday night’s Community Inclusion Program for families like mine—check it out by clicking HERE), gives people like me empowerment and connections.

If you are like me:

I urge you to check out this group if you haven’t already. The clickable links above will take you where you need to go. Stay strong and hopeful in the face of the truth. It’s hard to do, but it can be done. Remember the old adage, there is power in numbers. Trust me: there are more of us out there then you think.



Anonymous said...

I am so glad there are parents like you who look for help and encouragement from other parents who "get it", as that is the best emotional healer, but I'm especially glad to have connected with you so that you could share your experiences and let other families know they have a place to go. Keep up the great work!

Your "singing" parent helper

Kim Thompson said...

Thanks for the kind words!

I'll do a report on CIP at the end of the week. Watch for it.

"Having a place to go" as you so eloquently mentioned is key to well being and hopefulness. I am proud to be in the South Sound and have these kinds of resources available and at hand.

Stephanie Frieze said...

PAVE is a wonderful resource. They will even attend IEP meetings with parents if child's school is not giving appropriate services. They know the law and are not afraid to use it. Parents have far more clout with school districts than teachers. If a parent thinks that their student is not being served adequately and the district is not responsive, PAVE can be a valuable resource for support.

Meeting other parents through PAVE and the Companionship Program can provide support for parents and fun for students. Each family's needs are different and changes over time.

Applying for SSI also creates a good paper trail and possibly financial support/respite. Getting hooked up with the Department of Disabilities is important for parents of young teens. This organization will help with transitioning from school to adult jobs and services.

If a child will need extended parenting beyond school age there are resources to help parents accomplish that as well. Initially I was not told about this as our caseworker wasn't very good and then when I was I felt that it ws wrong to take money for doing the right thing. Upon reflection I decided that I wanted the paper trail for my daughters brothers so that the support would be there should something happen to me.

Again, PAVE is a good resource for navigating the system.

Kim Thompson said...

Hello Stephanie!

We love PAVE. They have been an invaluable source of good information and have helped us understand our options for schooling and school related issues. And you are right--they know their stuff legally.

The one thing I would love to see in the future are actual classes to teach parents how to navigate the IEP process!


Stephanie Frieze said...

That is an excellent idea and I would think right up PAVE's alley. Just remember that you do not have to sign an IEP and you can request for it to be amended if it proves to not be appropriate. The squeaky wheel gets the oil!

Lorraine Hart said...

I certainly know what it feels like to be struggling alone and then find supportive community, education and ways to move forward. I'm so glad the right doors have been opening for your family Kim. You're a strong and beautifully loving mama darlin'...and you recognise that journeys need fellowships. We cannot protect our loved ones from all the hurt involved in challenges but we can learn with them and find strength family and community. Bless your beautiful heart. xoxo

Mizu Sugimura said...

Sounds like a wonderful resource. Would have loved to have something like this when my son was in elementary school. Glad folks today don't have to be alone and in the dark ....