Yesterday I met with Bean’s team of educators and specialists at the school district offices for his semi-annual Individual Education Plan (IEP). I you have a kid on the autism spectrum, special needs, or any other learning disability, be it neurological or physical, you will someday have the first of many of theses meetings. In just over a week, I am back at the University full time to get my advanced degree in Special Ed, so I imagine I will have a completely different perspective to add as I someday sit on the other side of the table, but for now, this is about being the mom, and facing a team of 6 (almost always) women who specialize in educating kids like mine.
Bean’s diagnosis is PDD-NOS, which stands for Pervasive Developemental Disorder- Not Otherwise Specified. This means he falls on the autism spectrum, and is a fancy way of saying so. Autism Spectrum Disorder is also referred to as ASD. When he was first diagnosed, he was given the marker of Aspergers, but that has since been removed from the American Psychiatric Association’s Official Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Yeah, I know. Lots of big words. PDD-NOS simply indicates less severe forms of ASD on the diagnostic scheme. It’s even been proposed in the DSM-V to replace PDD-NOS completely with ASD. Confused yet?
Let me preface this by saying the first IEP can be scary, as I was unfamiliar with a lot of the terms, wording and legalese that the educators must use. I read all I could, asked a ton of questions, and have generally experienced this team to have my son’s best interests in mind when making decisions. All that said, ultimately I am the parent, and I have the right and obligation to say yes or no to anything I find questionable or concerning. It can be intimidating, but remember that you know your child best.
So there I am, sitting at a table across from six women who are in charge of directing my son’s education. The women (or sometimes men) are: The district psychologist overseeing my son’s case (each child is assigned), a speech pathologist, a Special Ed teacher who will be handling my son on a daily basis, an Occupational Therapist (OT), a Physical Therapist (PT) and the regular Ed teacher. Occasionally I’ve head the school psych sit in, as well as others from the district office. Like I said, it can be intimidating. But don’t be- you will come to love love love the OT and PT, because they- along with the SpEd teacher- are the one who are going to work miracles with your child.
There are legal requirements for public school districts to meet the needs of children with disabilities. This is part of why things are so official and representatives from the district are present. It’s to protect them, but also to protect your child, and make sure he gets all the help he needs and qualifies for. Remember that when it feels like too much.
If you’ve gotten to the point where you are sitting at an IEP, your child has a medically diagnosed need. You don’t get an IEP if you are having a hard time, or if your kid is just struggling. IEP are for kids with verified, medically diagnosed disorders or learning disabilities.
Before my first IEP with Bean, when he was just 4, he came in with such a clear diagnosis the OT and PT scheduled an observation time beforehand so they could assess him. When we then sat down to write his education plan, they already had notes on what he needed, independent of what I shared. This is where an amalgamation of many minds really helps. The OT and PT notes from their professional perspective, added those to what I shared, and the SpEd teacher then adds her piece, and suddenly we have a working plan for helping this child. It really is a team sport.
The teachers will discuss areas your child may need:
- Physical Therapy: this is actual large motor therapy. For Bean, this meant deep-muscle work, tactile experiences, brushing, weighted vests and sensory processing experiences.
- Occupational Therapy: This is generally more small-motor and fine muscle coordination. Things like holding a pencil and learning to press down at the same time ( a not uncommon difficulty in ASD kids), using scissors, making marks on paper, pincer grasp, pouring, serving, small manipulatives.
- Speech Pathology: Verbal skills, oral communications, forming words and giving verbal cues to function within a community. Again, very very common problems in ASD kids.
- Special Education: This is a teacher who has received extensive training in dealing with children who have developmental disabilities. (this is where I am pursuing my MA)
- Regular Education: Even a child who qualifies for SpEd will eventually have a regular Ed teacher, with whom the SpEd teacher works closely. The goal in almost all school districts is now to mainstream SpEd kids into neurotypical classrooms, with support staff from the OT, PT and SpEd teachers. It’s a big day when your child transitions to a regular Ed classroom.
There is a lot of dialogue at an IEP. The teachers and therapists have a great deal of skill and information, but they cannot create a plan for your child that will be successful without your input. The district psychologist then facilitates the legal side of making sure the plan is written properly and all people present are on-board and sign on the dotted line. Literally. Once everyone signs, this is a binding document, and the educators will follow the plan as laid-out, until the next IEP meeting.
Bean’s first plan, two years ago, (and actually his most recent as well) I requested time to look it over and read some more before I signed it. I don’t think they were thrilled about it, but it was necessary for me to feel educated and informed before I signed off. Recently, his team wanted to make some changes to his plan, and I declined signing the papers, instead asking for a meeting with the team so we could talk about it as a group. It took some finagling, but I had to follow my gut, and that was what yesterday’s meeting was actually concerning.
Overall, my experience with IEPs has been positive. I have found the people who specialize in this field do so because they really care about making a difference with my child, and they care about facilitating his growth and learning. They have also been Bean’s biggest cheerleaders as he reaches his benchmarks and moves on to the next set of goals. I truly love his team, and am so grateful for what they have done for him.
Dandelion Mama 
My oldest son attended a preschool that was part of the public school district because he had a speech delay. They gave him an IEP. Maybe I was just too stupid to know any better (it was my first dealing with a school as a parent at all) but it wasn’t scary or freaky or anything. It was nice. All these people gathered around to figure out what they could do for him.
What they did was tremendous, btw. By the end of kindergarten he was caught up in his speech and no longer needed an IEP.
Susan, you are absolutely right. I changed my wording a little- it CAN be scary- but I felt more like you expressed. I was SO grateful for these people who knew about my kids, and KNEW what to do to help him- I just profoundly grateful. I still am.
I hear some parents experience a grieving when they find out their child has a disability- but I never did- again, just relief and gratitude that someone could help us.
I have two kids with IEPs. I have to admit that there are times it is hard not to put on the battle armor (not b/c therapists and specialist but b/c the admins). I feel like I’ve developed good relationships with PTs, OTs, SLP’s and other specialists. Its one of the reasons why I’ve decided to go back to school to become a SLP. I became fascinated with what they do for kids with intellectual disabilities (like my daughter, The Love Magnet), and kids with learning disabilities (like my son aka Thirdborn).
One thing I’ve learned that you covered so well, if your mom-dar goes off then pay attention. Call meetings, don’t sign until you’ve read and understood everything, and ask lots of questions.
Tracy I think this post is a “good thing”. I left a comment over at MMW, but thought I tell you here as well. I too was kind of “o.k. my kid has a situation here, can anyone help me?” With one, sort of, and with the other we had a lot of really nice people who collectively still to this day can’t figure out why this super smart kid has unusual difficulties, humph. : / On the flip side it was awesome to sit on the other side of the table and help with others to find solutions and enable students with specific tools so they could achieve amazing things!
Soon, you will be consulting for IEP’s. We have them for three of the kids. So far, not bad. The girls have pretty cut and dried needs. Cubby’s will be tricky. He walks the line between what they CAN offer and what they WILL offer. His is next month.
Glad you had it and hope you are feeling good about it. I still wish you would come live with me. Maybe by the time you graduate, you can be Gracie and Cubby’s therapist. :-).
I am going to grad school for OT. Maybe you and my sister and I could open a practice some day. Five year plan??
Oh HECK yeah! Five year plan. When did you decide to do grad school? It’s been too long since I talked to you- do you have Little House’s number?
Where are you guys going to be opening this practice? I need to know so I can move there and you can work with Spencer.
Glad you are feeling like a part of the team….there are many parents out there that just smile and nod and sign.
Just a little clarification, a child can have a medical diagnosis, but may not need an IEP because their disability does not affect their educational progress.
Just so you know:) You will learn a lot moving forward in your schooling….please know that you can pick up the phone or email me with any questions.
Glad to hear Bean is doing well!
I have sat through many IEP meetings as the SpEd teacher. I loved my job. I spent many years of education to be able to do what I did. I knew the terms, jargon, and acryonms. And I did my best to explain to the parents what they meant, what goals we were working towards, and to involve them as part of the education team for their child.
It wasn’t until our daughter was diagnosed with a Speech Disorder, and I sat with the report from the therapist…the test scores, the terms, that I knew EXACTLY what they meant. I knew her disorder, I knew what the scores and percentiles meant. I knew exactly where she stood. Not just as the parent observing her struggle, but as the educator trained to know. I sat on the other side of the table, terms being thrown at me, terms I thankfully knew. And I was grateful for my education, my knowledge, and for the help she was receiving.
Kudos to you for taking such an active involvement in Beanie’s education!
I have sat through 2 IEP meetings so far and I’m sure there will be more to come. My son is going through Speech and OT and the first meeting was very intimidating especially with all the statistical terms. I really had to remember what I learned in Stats class back in college. I just recently went to my second with much more knowledge of how the meeting was going to flow. Luckily for us speech is going to continue through summer because it was in question with all the school cuts in our district. I thank god for all the great people who work with my son each day.
What a wonderful explanation of IEP’s. Recently, I’ve had a few friends who’ve been working on getting IEP’s set up for their children and its interesting to know a little more about what is involved and the purpose.
Thanks for some great information!
My ASD kid is entering SpEd preschool in September, so we’re getting ready for our first IEP meeting. Thanks to this post, I’m a little less nervous.
I found you while searching for weighted blanket tutorials and I’ll definitely be sticking around.
Hey Katie- cool and thanks! I hope you have luck making a blanket, and good luck with your son’s IEP.
Hi Tracy,
I stumbled onto your blog via BCC, and I’ve devoured all your posts on autism. My 7-year old was just classified this year by our school as ASD, and reading about your experiences has been uplifting, educational, and familiar. He is our first child, and while he has always been “difficult” to raise, autism never occurred to us. It was a shock, a scary, scary shock, when the district autism specialist showed us the results of her tests. I’ve been trying to educate myself about ASD, and we’ve recently joined a support group that has been pretty helpful… but I wondered if I could ask you a couple of questions as someone who has “been there”.
We have a school classification of autism, but not a medical diagnosis. Do you think there is any benefit to us to have his dr. pronounce that diagnosis on him? On the flip side, are there any downsides to this?
Also, in regards to the IEP, I recently learned that my son is not being seen by an OT. It was brought up at his first IEP meeting that he would see one, though it was not specified in the IEP– but even still, because we had talked about it I thought it was going to be a regular thing. The Boy does not tell me what he does all day, so I met with the IEP team for an update on how he is doing and WHAT he is doing, and they told me the OT from the district came in and observed him and decided that his behavior problems were because of ADHD and not his autism. I think they are wrong. As I’ve been learning about autism, I’m seeing more and more that he has sensory processing issues. for instance he is sensitive to sounds, and sensitive to *light* touches (he loves hugs, but the harder the better!), but he seems to be sensory-seeking and needs to be fiddling with something in his hands and needs constant movement. I will regularly find him upside-down. Ok, so after that long story, my question is this: How do I request that he be actually tested by an OT to see if he would benefit from OT services? I just don’t think that their “observation” was enough, and I really disagree that he doesn’t need it. Do I just bring it up in the next meeting? Do I write a formal letter requesting it? What is the protocol here?
Thanks for your help. It has all been a struggle, but I really identify with your posts about how much you love your Bean. Sometimes I feel bad because I feel like I love my son more than my neurotypical daughter– but it’s because his love is so hard-earned!