Conservatively, I estimate Rachel has had 45 IEP meetings.   I just returned home from her last IEP meeting – almost 16 years to the day we had her first IEP meeting to discuss transition to preschool.  Truly, it seems like such a long time ago in a galaxy far, far away.

At that meeting 16 years ago, we shared an “All About Me” booklet with just a few pictures in it.

 

She was the little bittiest thing with the biggest personality.   We told them that our vision for Rachel was that she grow up and be independent, attend some type of post-secondary training (university programs for individuals with an intellectual disabilities were uncommon then), get married if she wants to,  and have a job that she loves. We also said we believed she would reach her maximum potential by participating with typically developing peers. It wasn’t a particular long or contentious meeting.

Thirteen years ago we had a five and a half hour transition to kindergarten IEP meeting. Some of you have heard about it or read about it. It was a very contentious meeting where we said 13 times ( I still have it recorded if you are bored), “We know our daughter best.  The law says Rachel should be in the Least Restrictive Environment. The Least Restrictive Environment for Rachel is the general education classroom and that’s what we want. Each time we said it, Charlie Brown’s teacher started talking as though no one had heard what we said.  In this meeting, the special education teacher refused to sign the IEP because she said “Rachel could not function in the regular classroom.” At the end of that 5 1/2 hour meeting though, Rachel Nicole Mast was the first child with Down syndrome to be fully included in her kindergarten class at that school.

Time hop through the past 13 years and we have had a variety of meetings.  We had to get out that broken record routine a few more times. We had to prove that she should stay in general education.  We’ve added some pull-out here and there.  We’ve made adjustments.  Some of those 40+ meetings in between have been very contentious. Many have been long but productive and without a lot of disagreement. There have been some where I have not behaved as well as I should have. Some where school personnel has not behaved as well as they should have. Some where there was shouting between an administrator and a parent and that parent was not me.  But, I have always been able to leave those meetings and believe in my heart of hearts that Jonathan and I have done our best for Rachel.  Sometimes that did involve compromise, but we knew what we were willing to compromise on and what we weren’t, and we knew the law. Knowing the law has served us well as it has helped us to be able to advocate for not just what’s appropriate for Rachel, but what is the BEST for Rachel.

Today, her last meeting lasted less than two hours. We were primarily dotting i’s and crossing t’s and making sure we had everything in there that a post-secondary program would want to know.  Rachel usually comes to her meetings and does a PowerPoint and then she is out of there.  Too many people to see and she cannot miss class.  Today was different though.  She said she didn’t want to do her PowerPoint, but she told me she had some things to say to the team.

She went around and thanked different team members and told them how much she loved them. She really focused on how much she loved Ms. Fitz, case manager and volleyball coach. She talked some about the volleyball and announced she was trying out for the team when she went to college.  She confirmed that she is moving out of our house.  Still hasn’t told me when to have the U-Haul there and where her considerable amount of stuff is going.  She told them she wanted to go to college and get a job she loves.  Then, it was time to go. Our meeting was early and she was watching the clock and there were people to see.

She left and we continued and finished. Most of the people there have been there since her transition to high school meeting back in 8th grade.  While I have had to manage a lot of train wrecks, Rachel loves Olathe South and the Falcon Family. That is the way we wanted it to be. For the most part the people in that room today have loved and embraced Rachel. We have differed on a few things along the way, but they have tried very hard to support Rachel and to help her be successful. I believe they are genuinely interested in her future. They have done way more than they had to and we are deeply appreciative and grateful.  These people, these people have invested in Rachel Nicole Mast and their lives are better for knowing her and her life is better because of them.

About 12 years ago one of my good friends was headed to her daughter’s final IEP meeting. She had fought for inclusion.  Her daughter had accessed the 18-21 year old program in the district so she had been with the school district for basically 19 years. We are opting out of those services. My opinion of the transition services part of our district, well let’s just say not positive and move on.  My friend told me she was kind of sad. Just four years into it, I told her I would not be sad when Rachel had her last IEP meeting. And I am not. I am relieved.  I am weary.  I am exhausted more than I can explain if you’ve not lived through this kind of journey.

I do feel a different kind of sadness though. My sadness is that 43 years after the passage of the Individuals with Disabilities Education Act (IDEA), people like me are still having to make people include our kids and not just include them but make them provide what is needed to meaningfully educate our children.  My sadness is that 43 years after the passage of IDEA, the federal government is still only providing a fraction of the money promised to meaningfully educate students with disabilities.  The federal government’s commitment, their promise was for 40% of the funding but most years it is under 20% leaving states and school districts to make-up the difference.  My sadness is that even though IDEA 2004 specifically states:

• Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by-
  • A) having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to–
    • (i) meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children; and
    • (ii) be prepared to lead productive and independent adult lives, to the maximum extent possible;

kindergarten age children with Down syndrome are regularly offered placement in segregated settings as a first option.  That’s what makes me sad.

Today though, I am happy that IEP’s are finished. Rachel has been a courageous and formidable little warrior. I believe she has done her best, and I believe we have done our best.  In just 23 days, she will walk across a stage and receive a diploma just like her friends.  Then, I will cry.  Will I be a little sad? Sure, but mostly they will be tears of joy.

Jeremiah 29:11 says, “For I know the plans I have for you,” declares the Lord. They are plans to prosper you and not to harm you; to give a hope and a future.”  I look forward to seeing His plans for her.

 

NOTE: Thank you to the long line of educators, para’s, therapists, staff, administrators and friends who have supported Rachel in her educational journey. #weareblessed #wearegrateful