Life is Either By Design or Default 

Thursday, August 16, 2012 Autism Speaks View Comments

 

This is a blog post by Teri L. Steinberg, a parent and the Chicago Regional Organizer for Illinois Association of Microboards and Cooperatives, which assists persons with disabilities and their families and friends to create non-profit corporations that allow them to live self-directed lives through the use of person-centered planning, community supports and resource management.

It is never too soon to plan.  As the school year begins and you are thinking ahead to the IEP, decide to play a bigger part in the goal setting.  You will be your child's case manager for the rest of your life.  Start getting used to that idea now.  There will never be anyone who will care more than you.  Take on that role today.  Get used to it while your child still has the entitlements at school, to assist you in helping your child succeed.   

You can work on say, four goals each time. Say, one related to socialization, one academic, one behavioral, one focused on how they will handle themselves in the community, or one related to daily living skills or early career exploration.  It depends how old your child is currently.  But, don't put these things off until the end of HS and think they will automatically learn for example; how to do their own banking. You need to keep in mind teaching Concentration, Pace, Persistence, Flexibility, not just math, science, history, etc. 

I always send a parent letter that includes what goals I think we might work on, about two weeks before the IEP meeting.  It is always filled with hope and excitement over how my son is growing, maturing, and how I hope they will support him in the upcoming year.  My parent letter always includes thanking his IEP team for really caring about what's best for my son.  It is always respectful. 

Bring coffee & doughnuts to your IEP meeting and work together as a team.  Bring your child too. Before the IEP meeting, consider having your child prepare a presentation.  It might be a short video of them doing what they love, eating, playing, drawing, whatever.   It may be pictures cut out of a magazine and glued to paper.  But it adds a human slant, not just numbers and measurements, to the meeting.  If your child is able, they can read, sign, or use a pre-typed communication device, to deliver a message to the team, introducing themselves.   People on your team are more respectful in front of him/her when stating accomplishments and mastered skills or the goals and not just the deficits or areas needing improvement.  Concentrate on what she/he can do, if supported well.  Your team can decide if the skill is emerging and your child is progressing or if you need to continue the goal.  

Talk about what the DREAM YEAR would look like, and then backwards plan it.  If the goal is to get to here, by the end of the school year, then what do we have to do in six months, or three months, or next week?  How will you know if your child has had a good year, if you have no idea what that would look like? 

The focus should always be: "What will life look like when he/she is a 30 year old adult, living and working independently, in the community with whatever support that might look like at that time?"  "What do we need to pre-teach now to be able to have that independence when they are an adult?" Think of them as grownups.  Going about the typical life of self-care, home, health, money, banking, employment and career interests.  We need to grow and nurture these skills over the next few years. Let's design a year filled with attainable goals.  It should be a stretch, but not stressful.  Let's continue to move towards the future, taking purposeful, baby steps forward, toward where we want to go. 

Here's wishing you a Happy, Healthy, school year.

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