Tomorrow we meet at Demetrius’ school to discuss his IEP (Individual Education Program) for the upcoming school year. I will blog on that more throughout the next few days.
Today though…if you are reading this blog, there is no doubt you know some variation of this statement, “the sooner you can get your child diagnosed and into therapies for autism, the higher the chances that it can significantly impact his/her early education development.”
I kind of feel that way re: IEPs, but for the parents rather than the kid, the sooner you get your child into school programs that require the development and writing of an IEP, the better equipped you’ll be in the near-term to begin to navigate the difficult directions on the map of education for your child.
I would be remiss if I didn’t tell you that we made a number of mistakes, missteps (if not mistakes) along the way in developing our child’s goal/tactics for his first year of kindergarten within his IEP. I would also be remiss if you read this and think that I’m some sort of expert in this area – that would be my wife, Kim…she knows more about autism and approaching the educational arena in two hairs on her head than I know in my whole body. And we made mistakes. Kim would tell you that we got caught looking at the trees (worrying about how things are written in the IEP more than if they are helpful in achieving the overall goals) versus seeing the proverbial forest.
But here’s what I’ve learned through the first ¾ of Demetrius’ kindergarten year in re: to his IEP…
What I think we did do right was:
• Adapt – we saw what we liked and didn’t in terms of his environment and learning style, and we addressed these issues with the school almost immediately, days after the first of the school year
• Engage – you’ve got to speak up – an IEP isn’t the Ten Commandments, this roadmap can be adjusted, and you should sit down to discuss, evaluate, and argue if need be – with all his/her teachers, assistants and caregivers to get feedback and changes made…no matter what your personal style is – no wilting violets or passive aggressive behavior here – folks, this is your child! Speak up and discuss!
• Ask – all of you know the other moms and dads in your kids classes, get over yourself and good manners (like ‘mind your own business’) and ask the questions about their child and his/her IEP. Trade the IEPs like baseball cards. What are they writing in their IEPs and why? Find out why they worded something a particular way, or wrote it in a certain fashion. I don’t think I’m getting off the reservation when I say that some of the best things in Demetrius’ IEP we got from asking questions about what Kim saw in another’s IEP (again, she’s point on this in our family…), engaging that parent in a discussion about what they did and why and adapting our IEP where it makes sense
• Advocate! – Finally, and if you can afford to do this – hire an advocate
Over the course of time in this blog, you will find out that I’m in the cheap hall-of-fame. I am extremely frugal (I buy clothes off of eBay – wash ‘em first before I wear them), but I can tell you that the best money I have spent on anything over the past few months was hiring an advocate (Ms. Amy Dinehart for those of you here in Atlanta – we recommend her) to help us rewrite Demetrius’ IEP and deal with the teachers, administrators and special needs counselors appropriately on the controversial areas and subjects…and just to evaluate the document from the floor to the roof.
In regards to our advocate: first – and this is important – she’s a teacher herself. Second – she has special needs in her family. She more than understands what we are up against and what we are concerned about as parents…and she understands the concerns, policies and situations that the school needs to contend with in dealing with us and our requests for aid/changes.
In writing, she was able to help us translate our wants (and demands) for Demetrius from ‘Parent Speak’ into ‘Teacher Speak’. She was able to better help us define the tactics that would help Demetrius achieve the goals we set for him. And finally, she is able to be a somewhat dispassionate third party at the table when we sit to discuss and argue about Demetrius’ IEP and help both sides communicate with each other.
There is no secret sauce here folks – she’s a liaison that helps two sides reach an agreeable solution, if not, consensus. I will say without reservation that her skills and counsel has helped Demetrius begin to make considerable progress in the second half of this school year (there are many factors, but I do call this one out as obvious in my mind).
And as always, you get what you pay for. Nope – an advocate won’t be covered by any sort of health plan or Medicaid program. So I would say that you stop buying the Starbucks and going out to lunch…put away your tax return, or trade in that digital cable for basic service….do whatever you can to save the money to hire yourself a good advocate to help write and argue your child’s IEP. Best money I’ve spent in 2006…and it is only mid-April, and I’ve spent a lot of money this year!
And like an early diagnosis and therapy (which I started this rant with) – if you get an advocate early on, then you can have a great IEP in place to help your child achieve all he or she can for that particular year in school or early in his/her or educational journey.
The final point for this entry is about how do you find an advocate? I would start by contacting your special needs pediatrician to find out if they know one or can point you in a direction; work your network – there is probably a parent that knows of, or has hired one in the past – you just got to ask; hit up the therapists, and finally, ask your special needs educators and administrators. They’ve probably dealt with a few in the past.