This is the tenth installment of the story of our journey with Maura…
So after the seizure and the first para-professional and the medical plan kerfuffles, one would think I could take a break and just enjoy Maura’s school year.
That’s not how my life worked.
We started having issues with the therapies Maura was receiving. Not from the therapists – they were still doing what they did. But one therapist had to leave mid-way through the year. We all knew this was coming. However, the therapist who was going to cover Maura and one other student had her own family emergency the week she was to take over and she wasn’t able to make it in. Completely understandable on her part.
But that left Maura therapist-less.
See, while there was someone coming in to cover the other kids who needed therapy, she was only there a couple days a week (why they brought in a part time person to fill a full time job is still beyond me…budget maybe?) Maura’s IEP was written up so that she received therapy several days a week. More days than the one therapist the administration hired to be there.
It soon came to my attention that Maura wasn’t getting all the therapy she was supposed to be receiving. And the more I dug around, the more therapy it seemed she was missing.
This meant more calls and emails to the special ed director.
And this is where I started to turn into That Mom.
You know That Mom – the one with the special ed child, who goes around with big binders of paperwork, waving about letters from doctors, muttering under her breath as she leaves a meeting, cursing loudly as she hangs up the phone after yet another frustrating call? Who then would turn back around to call again, to be made frustrated again, the glutton for punishment who seems just a little bit crazy to outsiders?
Yeah, That Mom.
I contacted the special ed director over the issue of the amounts of therapies Maura was actually reading. And this is where I learned Valuable Lesson Number One-
Watch how they word the IEP. Wording matters
In the matter of Maura OT (occupational therapy) it appeared on papers home that Maura wasn’t getting all her OT. Now Maura was at that point nearly 7 years old with the fine motor skills of a 3 to 3.5 yr old. OT was important to me. Especially as verbally, she was just as behind. Communication in any form was our main goal for her.
So I pointed out that Maura seemed to be lacking in OT time. The special ed director pointed out that Maura the way the IEP was worded did not read 2 times a week, 30-60 minutes each session – no, there was this phase “per week” that meant that Maura only had to receive therapy up to 30 minutes a week. Twice in one day was fine. Or a 15 minute session one day, a 15 minute session another day. (She only got OT up to two days a week because the therapist was only in the building twice a week.)
I’m pretty sure I saw a red haze with that one. I thought we’d signed Maura up for as much OT as we could squeeze into the schedule. Instead, I agreed to a giant loophole where they could give her the least amount agreed to. Legally.
That said, even when it came to the bare minimum of OT, we figured out that Maura had been short-changed. Notes were made, and make up times were found.
Then I brought up the fact that Maura should have been evaluated that year. By law, she was to be reevaluated every three years. I had asked her teacher the year before if Maura was up for evaluation, and was told no, it wasn’t time yet to reevaluate Maura. When I was going through all the paperwork, I realized that Maura should have been evaluated before starting kindergarten, like I had asked. (Also, I just thought it made sense – find out where she is as she starts in a new school and program, so we’d all know what we were dealing with.)
The special ed director said to me that oh no, we all agreed that Maura didn’t need to be evaluated at the IEP last spring. I signed a paper agreeing to it. She could send me a copy of that form if I’d like.
I think I could have physically spit nails at that point. I told her that obviously, I didn’t realize what I was signing, because why would I agree to waive the right to the very evaluation I’d been asking about?
Part of my charm is having a scary memory. I remember things, vividly, with detail. I remember sitting in the IEP, as everyone was coming in, and we were doing the “Sign ALL the forms” portion of the IEP meeting (which if anyone has been in one, you know what I’m talking about.) I remember the special ed director handing me stuff to sign – yes I was here, yes I knew the one therapist wouldn’t be present and I was okay with that…and then her saying (not a direct quote) “Now we all know Maura qualifies for special ed, we don’t need to prove it” and handed me a form to sign. Agreeing that Maura needed special education. And I signed it without really reading it.
I was obviously a fool.
When I did finally receive a copy of that paper – almost a year later – the thing that leapt out at me was how they filled out the whole form – including parents names – for us. As participants in the “evaluation review”. How the reevaluation was being requested by the School District. And it was signed by the same teacher who I asked about getting Maura new evaluations. All the boxes had been checked for us, including the “I/We have received a copy of the Parent Rights and Due Process Information” box.
How handy. All I had to do was sign in, in the middle of signing other forms, in the chaos of people arriving for the meeting.
How very clever of them.
Valuable Lesson Number Two – Always ALWAYS read the paperwork. ALWAYS. Because someone out there might try to sneak something by you.
By law, one can request a new evaluation every year, that much I’d learned, so I asked for one. A full, multi-disciplinary evaluation. A lot had changed with Maura since the last evaluation at age three.
The ridiculous part of it all was this line regarding why a new evaluation wasn’t needed, as the one that was 3 years old ”…remains the most appropriate description of Maura.” The one that didn’t mention epilepsy or apraxia. That one.
Eventually, the special ed director and I had the big meeting about speech therapy, which Maura was also lacking in due to circumstances out of the therapists’ control. I never blamed the therapists for the lack of therapy time – their job was not finding someone to cover for their absence, it was the special ed director’s. I was sympathetic to the whole situations that led up to all of this, but a month passed before the special ed director and I were able to discuss solutions to the lack of Maura’s therapy. A month where Maura – who at the time of her IEP months before, measured at the 2 yr one month level on a comprehension test, who had apraxia, who was not able to follow 2 step directions – was not getting the bare minimum of speech therapy.
My mother-in-law was visiting us and so accompanied me to the meeting for moral support. I was worried that I’d fold under pressure and not get what Maura needed, and banked on the fact that she would jump in and do what needed to be done if I failed.
That was the day I discovered that I could manage fine on my own, I didn’t cave to any pressure.
Valuable Lesson Number Three – Don’t underestimate your own strength and ability to get stuff done.
I sat there in a small meeting room in the school with the special ed director as she came up with ideas as to solve the speech therapy issue.
Solution Number One – Maura – who was scheduled to have ST 3-4 times a week – could meet with the new part-time therapist twice on Mondays, twice on Wednesdays.
I was supposed to say “Oh, that’s great! Thanks!”
I didn’t say that.
I said “No, that’s not acceptable.” Then explained how my daughter needed repetition. Lots of repetition. Because she had short term memory issues thanks to where her seizures were located. Two hours of speech therapy once a week wasn’t as good as even 15 minutes every day.
So she offered Solution Number Two - She could meet with New Speech Therapist #1 on Mondays and Wednesdays, and she’d bring in New Speech Therapist #2 on Fridays.
“No, that is not acceptable.” is what I said. You know, instead of “Are you freaking kidding me?” I mean, I know my child is pretty laid back, but dealing with two different and new people each week was asking too much of any child – asking this of a child with special needs, no matter how laid back they are, is a bit too much.
And this is the woman who presented herself as some sort of expert of special needs children. Of course, she also thought my child was “too high functioning” for a special school. (No, really, when I asked about the one special school in the county, she told me I should count myself lucky that Maura was too high functioning to attend the school.)
The conversation went back and forth a bit between each suggestion. Finally she offered bringing the speech therapist from the middle school over each afternoon (because mind you, at this point, they had a LOT of time to make up in order to be in compliance with the IEP.) I knew this speech therapist and happily agreed to this solution.
So finally by…March?…we had Maura’s kindergarten year ironed out. They would “catch up” on the missing therapy times, her IEP would be in compliance. We had a medical plan in place, and evaluations were happening….
…just in time to start the new IEP.
Once again, it was too many people squeezed into a small room to discuss one little girl. It was supposed to be one hour. Four hours later, we had most of the details ironed out. But that time was spent with things like me having to explain why I was tired of Maura having the same goals (stand on one foot, draw a straight line, walk down steps alternating feet, write the letter M). I questioned why the OT was doing all sorts of gross motor skill stuff with Maura when Maura was under the consultation of the district’s physical therapist. I wanted it explained to me why Maura was spending OT time crawling on the floor. I heard how Maura needed to work on her balance, etc, and needed to master this before moving to the next goal. I stated that until someone cured her of her seizures, she’d never have good balance. I was told she needed to walk down stairs without holding the railing. I stated that because of her poor balance, I actually encouraged her to hold onto the railing. Finally, we came to an agreement and settled on some new goals. Before I knew it, the OT and PT were gone, having other commitments, and the IEP continued.
Speech therapy was easier – it was a “She needs lots of it, let’s try to see her daily” thing. It was harder to deny that Maura needed lots of help in the speech department. All she had to do was open her mouth and you’d realize how many issues she had. We also discussed resource room time, where all the special education would happen, and again, it was hard to deny her more time as the psychology report showed that she had an overall IQ of 42.
Looking back, I can’t believe how difficult it all was. Maura’s needs were met by basis of schedule and budget first it seemed. From administrators, I got the sense that they felt Maura just wasn’t worth the investment. I mean, we had a girl whose one evaluation showed that she had the gross motor skills of a 26 month old at age 7, and yet they wanted to manage with just 15 minutes of physical therapy twice a month. I pushed for 20. Her fine motor skills were at a 3-3.5 year old level, and hadn’t changed in a year – yet she qualified for 30-40 minutes of OT twice a week. Because that’s all the time there was for her. The OT was only there twice a week. I had to fight for her to have individual therapies, despite the IEP being full of “Maura frequently requires prompting to say on task” as well. (They wanted it to read “group or one on one”.) Daily living skills were rated at no higher than 2 years 9 months – and yet on the IEP the box “Considered but NOT applicable” was checked. The girl who could neither write or speak clearly also had the “Considered but NOT applicable” box checked in the Assistive Technology section.
You can see why the IEP took four hours.
And yet, there were minor changes I wanted ironed out before I signed the IEP. Things to do with OT, changes to goals made. I talked to the OT, who was very agreeable to them all (we may not have agreed on everything, but she was always nice to me and lovely to Maura, and took the time to hear me out, which I truly appreciate).
I went back to meet with the special ed director and speech therapist to discuss some of the speech make-up times, and at the end of the meeting, I said how we had discussed tweaks to the IEP, but now, it was all good and I’d be signing that document and getting it right over to her.
The special ed director looked at me and said that my signature wasn’t necessary on the IEP.
I pretty much gaped at her and said “Since when?”
She explained happily that it was never necessary, by law, it’s not needed, and they didn’t need my signature on it.
She also then explained that the IEP was completed at the end of the meeting and therefore, any changes I wanted to make had to be addendums….didn’t I know that?
She explained – again, with that ever-so-pleasant smile on her face – that when the IEP meeting is concluded, that was that, it was finished and now legal. Without my signature.
I looked at her and said if I had known that, I wouldn’t have let the OT and PT go until I was good and ready.
She said it would be no problem to add the changes.
I told her I would be signing it. Blood literally boiling, I went home and told my husband what had happened.
The next day, we called for a meeting with the superintendent. The time of bullshit was over.
That meeting was interesting. The superintendent was a hard man to read. He had this great ability to keep a calm expression on his face the entire time. Until we mentioned that we were told our signatures weren’t needed on the IEP.
He frowned and said that they strongly encourage parents to sign the IEP, that the special ed director was misinformed.
I told him that he might want to tell her this, as we weren’t the only parents told this. (God bless small towns, you hear a lot!)
We also made his expression change when we talked about Maura’s lack of medical plans when it came to her seizures, and how long it took to get one in place. We also mentioned things like the IEP not being followed, how therapies were being missed, and then how she pointed out the loopholes to us. My husband looked at the superintendent and said calmly “She’s playing legal games with us. That’s okay. I’ve got several lawyers, a sitting federal judge and a retired Arkansas Supreme Court Justice in my family. I can play legal games too.”
He took the special ed director off Maura’s IEP team.
Some time after that, I was sitting with two school staff members apologizing for becoming That Parent. The one looked at me and said that I’d earned the right to become That Parent, that we were getting jerked around. Which was a bit of a relief that we didn’t just come across as anger-blinded jerks, that we did have good reasons to be upset. At the end of the day, we weren’t asking for more than was needed. We weren’t being unreasonable. And we were trying to be the best advocates for Maura as possible, while trying to respect the system and always giving praise to those teachers, aides, and therapists who were so wonderful to our child.
It’s taken me about four days to write this post, as it actually brought back all those bad feelings I had at the time. It was frustrating and added to my already stressful life, and so much of it was unnecessary. It basically came down to one person, who sadly, was in charge of the final decisions when it came to my daughter.
What’s kind of funny about it all…Maura is this very outgoing friendly girl. She is the original people person. She will say hi and high five people and run up to them and give them hugs. She’d be high-fiving the 4th grade teacher and hugging the speech therapist…and yet she’d barely acknowledge the special ed director. This woman would try to get Maura’s attention, say hi to her, and Maura would just look at her and go the other way.
I’ve said it before, and I’ll say it again, Maura may be slow, but she’s not stupid. She’s a great judge of character, and she had no interest in this woman.
First grade went off with mostly no hitches. Sadly, we didn’t have our super-awesome amazing para-professional, she had left, but we did get someone nice. She was a quiet sort, but she cared about Maura and Maura loved her, so it worked out well enough.
The one hitch to first grade was the day Miriam came off the bus fuming. She came in and huffed out that she found out from a friend that Maura was being made fun of by other students. I asked what happened, and Mim told me how Maura was crying in the hallway and her friend saw her and asked Maura why she was crying. A group of kids were going by and said “Ha ha, you have to take care of the baby!” Mim’s friend was incensed by this and told Mim, who came home angry.
I took it all with a grain of salt but made a note to ask the teacher about any incidents. However, I didn’t have to ask, as the next night, something similar happened – right in front of me. We were at ballet, Maura went first, then we’d sit in the hallway and wait for Mim to have her class while Maura played on the iPad. Maura was upset that night because she couldn’t understand why she couldn’t join Mim in her class. Now, when Maura’s upset, she can howl and make a scene. I get that. As I sat there with another mom, Maura was crying, and one of her classmates went to go into the bathroom across the hall from us. She saw Maura crying and this little girl looks at my daughter and says in that snotty little girl tone ”Ha ha! You’re a baby!”
My jaw hit the floor. All I could say to this girl was “Excuse me?” Her eyes got wide and she darted into the bathroom. I looked at the other mom and she was gaping as well. I asked “Is it me, or was that rude?” She agreed.
This was a girl who knew Maura, did dance classes with her, who went to school with her, who had no problem watching movies on Maura’s iPad after dance class with Maura. And yet she had no problem laughing at my crying child, saying almost the exact words Miriam reported to me. Obviously something was going on.
I went to talk to the teacher the next day, because I was disturbed by the fact that my child was being mocked openly by classmates. The teacher kind of sighed and revealed that this had been a big problem at the start of the school year, and had become a problem again recently. Which was all news to me. She assured me that it would be looked into more.
I don’t know what ever came of it, we were out the door at that point, getting ready to move to Ireland. But when a friend of mine, who loves Maura dearly, told me she was worried about us moving because Maura was so loved there, and what if other kids made fun of her, I was all “Um, kids HERE are making fun of her. It can’t get worse.”
Honestly, as long as that special ed director is still in that school district, I would not move my child back there. Two and a half years later, the thought of her still brings up bad feelings. It is true – one bad apple can spoil the bunch. In our case, it was one bad administrator ruining a lovely community for me.
Yet, at the end of the day, I know we didn’t have a bad experience with mainstreaming. We had a lot of good things happening, several amazing people working with Maura, and I learned how to fight fairly for what my daughter needed. It has given me a lot of insight and perspective, not just from my experience, but from chatting with other moms with children with special needs. It has helped me know what works and doesn’t work for my daughter, especially after experiencing a special school for students at the same level as Maura.
But that was our fun with mainstreaming. We may be going back into some sort of inclusion program when we move. That said, I’m going to go into the new school district with a positive outlook and the idea that everyone is fabulous at what they do. You know, look on the bright side. You know what they say…
Some things in life are bad
They can really make you mad
Other things just make you swear and curse.
When you’re chewing on life’s gristle
Don’t grumble, give a whistle
And this’ll help things turn out for the best…