When special needs lurks in the shadows of your life, at first, quietly, and then, more forcefully, knock-knock-knocking on your door, you want to slam the front door in his face, and run quickly downstairs to lock the back door before that wily, tenacious asshole figures out his next entry point. You double-bolt the windows. Pull the shades, and huddle, terrified, under a blanket in the corner of the room, praying that he doesn’t find you.
That he moves on to another family. Any family, really. Just not yours. Just not your baby.
It’s human nature – Mother Nature, if you will – to not want to face the terrifying truth that special needs, autism, and life challenges are already in your home. In your life. In your child. They are there, long before you hear and fear the knock at the door.
At some point, you realize that it’s time to at least wonder why he’s knocking at your door. Wonder whether he has something meaningful and important to say. You have to poke the sleeping beast that is your too-overwhelming pile of options, and start speaking with the experts. Those who have seen the same things you’re seeing, before. Often, even. Those whose training helps them to know what, if anything, your unexpected guest is trying to tell you, in a way that your background, and Mama-heart does not want to hear.
Because this shit is the shit that no mama wants to hear.
Two years ago this spring is when I invited Tucker’s first special needs teacher into my home, willingly. I even offered her coffee. I cleaned, in anticipation of the visit, made sure Tucker had enough sleep the evening before (so that he’d be on his best behavior, unlike the day he had his Early Intervention evaluation when even I could see that he was possibly acting, um, weird). I wore something other than my favorite stained sweat shorts with a forever un-mended hole in the crotch. I had respect. And I wanted answers, opinions, and help.
I really needed help.
That day, two of the most amazing women I’ve known came into my home. These two women have dedicated a good chunk of their lives to special needs education, evaluations of not-yet-three-year-olds, and to making moms like me feel like everything just might possibly maybe be okay. Even with special needs. Right here. In my home. In my son.
It was due to their recommendation that Tucker began preschool at barely-aged-three in a Preschool Autism Classroom (PAC). It was also when I found support, moms with similar fears, doubts, denials, hopes, and understanding. Through this, I have found Moms Who Understand. People. People who accept my little boy just the way he is. Who do not focus on the fact that he’s struggling with pronouncing his name, and, instead, focus on the fact that he’s fun. Adorable.
A few months ago, Tucker transitioned into a Less Restrictive Environment (very common term in Special Education) and has found yet another loving, supportive, amazing group of teachers to help guide him, teach him his ABC’s, and listen to me about what I think his current biggest challenges and needs are.
I’ve been lucky to have a team who listens to me. I know that’s not always the case, so I’ll take a moment to thank them, in the chance that they stumble here by accident or on purpose. Thank you, Tucker’s teachers and IA’s and therapists. You know who you are. Thank you.
Tucker will be five this summer (sidenote? Listen to your Grandma when she says that time flies by more quickly by the year. She was right.). Because of his age, he’ll be transitioning to kindergarten next year. And this week, we had his transitional IEP (Individualized Education Plan) meeting.
While preparing for it, I realized how full of anxious, wake-you-up-at-3:00 am-thoughts I was. Now that it’s behind me, I have to wonder a bit at why these meetings are so stressful and scary.
In concept, an IEP meeting is a good thing. It’s a chance for parents, teachers, and therapists to sit around a table, in chairs of equal height, and determine the next year’s goals. Sounds good, right? So why is it not, and why does almost every parent I know dread them so? I’ve been thinking about this a lot and reached out to some of my PAC mom friends to ask them what they think. Based on my 3:00 am thoughts, and their input, the below is what I have come up with.
Why IEP Meetings Suck
- They’re intimidating. In addition to my husband Robert and me, there were seven other people at ours this week. Seven! For a total of nine! Seriously. That’s intimidating, no matter how nice everybody is.
- We heard the word “disability.” A lot. While my mind knows that my son’s learning delay (and delay is so much kinder sounding than disability, isn’t it?) is significant, and is what qualifies us for an IEP in the first place, the word fills my heart with hurt, pain, and doubt about his future. When I look at Tucker, or think of him, I see only silly grins, potential, the love of my life, and ability. I see ability to change the world. To be the world, to even more people than just me.
- An IEP, by nature, is designed to focus on all the stuff that our kids aren’t doing, and should be, based on typical milestones. It’s really easy to resent that somebody created milestones and also to not focus on them.
Because IEP meetings suck, it’s best to be prepared for them. To walk into the room, knowing what you’re getting into. Again, some of my PAC mama friends have helped me to come up with the below.
How to Prepare for an IEP Meeting
- Know your rights. Because you have them. You have a lot of them.
- Try to establish a good relationship with your child’s teacher. It will go a long way. Tucker’s teachers have been lifesavers for me.
- Ask questions. As many as you want. Over and over and over again, if you need to. For as long as you need to.
- Bring your child’s photo to the meeting. Make those who do not know him realize that he’s an adorable, amazing person (I have not actually done this and it was a suggestion by one of the moms I’m friends with who is a special ed teacher, speech expert, and has a step-son with Asperger’s). I think it’s an awesome idea.
- Bring somebody with you. A therapist, an advocate, a friend, or your mommy. It’s good to have somebody there to squeeze your hand if you need her to.
- You are the boss. The Big, Big, Biggest, Most Important, Most The-Decision-Stops-Here Boss of all.
- If you don’t agree with the IEP, don’t sign anything. You’re allowed to hold further meetings, talk with doctors, your mom, and the neighbor, if she’s willing to listen. You’re allowed to wait. To cry. And to wait some more. You’re the bigboss.
I have absolutely no interest in attending another IEP meeting anytime soon. But will, if it comes up before I’m expecting it to. Because my little boy? He deserves every opportunity at success that every other person before and after him does. That all of us do.
The bottom line about IEPs and special needs is this: Every single one of us, those of us who don’t have to advocate at all, advocate for our child(ren) during nine-person meetings, at the playground, and, sometimes, within our families, see nothing more in our child than our child. You and me, mama, are more alike than different.
We are simply here, doing the best, and occasionally less-than our bests, for our little humans. And they, whether special needs is – or is not (because it doesn’t matter for this point) knocking at your heart, or already taken up the dusty spare bedroom – and all of the rooms – in your house, are our little humans.
Full of laughter.
Glee. Tears. Annoying moments.
Most of all, hope. So I hope that the next time one of you needs to go to an IEP, that you’ll remember this: You Are The. Boss. The Hope. And your son? Daughter? The hope and the future and the everything.
All the everythings.
This has been a (really long) Finish the Sentence Friday post. Today’s sentence was brought to you by Kelly of Just Typikel. Go thank her for her contribution that I had nothing to write about until well, I did.
The sentence is “I have absolutely no interest in…”