Tomorrow morning I will attend yet another IEP (Individualized Education Plan) meeting for my daughter who has Down syndrome.
I’ll never forget the first one. She was just three years old. I remember worrying about an ‘us against them’ attitude between the professionals and my husband and me. I was afraid my voice wouldn’t be heard. I was afraid I didn’t even know what to say.
Our family has been a part of the disability world for over eight years now. I’ve sat in on countless IEP meetings. Some have gone according to plan and others have been less than satisfactory. At some point, though, we end up with new goals and laid out plans for achievement. I’ve even come to enjoy IEPS (mostly, I mean, let’s be realistic). I thank God for people invested in the development and care of my children. I’ve come to see IEP meetings as ‘we.’
But here’s what I want to know…
Where’s my IEP?
Because I’m mostly winging it. And a lot of days I’m not doing so hot. As a special needs parent, I’ve decided a team of professionals invested in my development, health, and welfare, would be an outstanding addition to my life.
Can you imagine?
Gillian will exercise 3 out of 5 times a week for thirty minutes with 80% accuracy.
When provided several eating options, Gillian will choose fruit with a 50% accuracy.
Gillian will ‘clean up’ her expressive language towards her children through the use of deep breathing and removing herself from the situation with moderate prompting from her husband in 10 of 20 opportunities.
Yes, please.
Figuring out our needs for ourselves
“Gillian, what do you need right now?” a friend asked me the other day. Excuse me? What? Me. My needs. Not the kids’. Not the family’s. But mine.
I could hardly answer.
I’ve often said that special needs parents have special needs themselves. After thinking about it, currently, a few of mine include: the need to know my limits. I can’t try to do everything because I will burn out. I need help with my kids. I have two girls with disabilities. They are getting bigger and stronger. I need to come close to God. I need to pay attention to my health. But in the midst of therapy and doctor appointments, driving our older kids to and from after school activities, work, home, church, well, you get it. Some days I am convinced that the only real need I have is enough time to get through all ten seasons of Friends on Netflix (It just got added. You’re welcome.)
This is where an IEP would come in handy. How does one set goals for, say, the next six months, and then, gulp, work towards them? In a family affected by disability, things change in an instant. I’m doing well if I get my kids to the dentist and remember the weekly occupational therapy appointment that I seem to forget … every week. My needs are last in the family, or minute to minute at best.
Intentional instead of reactionary
What I am really talking about is self-care and attempting to live intentionally instead of reactionary.
For most of us, these concepts are simply notions. Our lives are reactionary by nature because control is out of our hands. One kid bites her sister. Another runs out into the street. We are prepped and ready to react. But plan? Um? No.
But here’s the thing… intentional living doesn’t have to be just a notion. I’m serious. Even in our sometimes inharmonious homes when we haven’t even a moment to ourselves, we can still attempt a little self-care. We can live intentionally there. Yes, even there.
Let’s face it, special needs parents don’t have IEPS. I’m probably never going to have a whole team of professionals monitoring my life. But if I stop for a moment and look around, I do have my husband, family, and friends from church and my community who care. I have my monthly therapy appointment that seems to help me break down the stress in my life to bite-sized portions. And I have Jesus, the greatest deep breath a person can take, actual living water, someone who, when asked, can help me set measurable, good, and God-honoring goals and help me achieve them.
I guess I kind of have an IEP after all.
Amazing post! As a mom of 3 kids with autism, it is so hard to live intentionally, as many if not most days are spent reacting to life in a special needs family. I am sure we could all write our own IEPs, as many of us end up writing them for our kids, but wouldn’t it be nice for someone else to do it for us? But as you, I know whose eye is on the sparrow, and I know He watches me.
Love this message. I think instead of resolutions I won’t look at after, well, 20 min, I will write some iep goals for myself. I think I really need the expressive language one you mentioned!
yes…I could use and IEP too…well, maybe I already have one that I carry around in my head…I think what I could really use is emergency supports…so, instead of getting 4 phone calls where programs and care givers cancel all in one day, I have someone who swoops in and deals with all the fallout from that with kids who don’t accept change well…yeah, I don’t really need an IEP, I need Mary Poppins…
Today is one of those needy days for me–thanks for this post and the ‘not so alone’ message you have given me!
What a great, encouraging message! I love the idea of an IEP for the hard-working parents of special needs kids! I could use the same goals you wrote out…plus a good nights sleep for once (not so easy with a toddler who still wakes up in the middle of the night). But you’re right…with Jesus, and the God’s Word, we kind of already have an IEP, or something even better!
Amen! Thanks Jen!
Actually, I do have my own IEP…I have two young children with autism, and we have a really excellent publicly-funded family autism therapist. We meet every two weeks or so and focus on one or two main goals at a time. Some of them are about me. Others are about what I can do to help kids grow in a new way. She happens to be using RDI, but I think the structure of this is just common-sense -gentle and paced to what we can handle.
Another aha moment for me recently in the area of goal-setting was Tim Challies’ series on productivity -especially the first posts on considering what our purpose is. http://Www.challies.com
That is so interesting, Deborah! I’ll have to keep my eye out from programs like that in my neck of the woods. So glad you get that kind of help.
You inspired me. to write my own blog post.
thank you
https://encouragementexchange.wordpress.com/2015/01/07/one-thing-i-wish-id-done-differently/
That’s great! Heading over to read your post now. 🙂
As a mom of a adult with disabilities, a few boys with learning challenges, and a parent who became disabled, I’ve had times that i wish someone would label and accommodate me! I remember when a few close friends started sincerely asking about ME and it floored me. Just having someone that sees is such a relief!