You…yes you, holding that sweet baby girl in the plaid dress. Let’s chat.
You don’t know it yet, but that sweet baby girl has a secret. One that will slowly and not completely reveal itself over the next few years.
It’s going to break your heart. Repeatedly.
But I promise you, it will be okay.
No. Really.
Sure, you’ll need therapy. And you’ll get a bottle of Prozac with that therapy. It’ll help. It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.
That baby girl’s going to keep you up at night – literally and figuratively. You will worry over her like no other child has made you worry. I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.
One by one, you’re going to give up on the dreams you had for this baby girl. The ones of her going to school, going to college, what she could be as an adult. The furthest ones will fade first. For a while, you live in the moment. Eventually, you allow yourself to think a couple of years ahead tops. Oh, you will plan for her long-term, but in the most generic of ways. Inheritances. Guardians. You even ponder the idea of a group home. But mostly, you don’t think of those things. You just take it a few days at a time. It’s just easier that way.
You will meet all sorts of people because of this child, and their true selves will be revealed. You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through. But you’ll learn that most people, at heart, are good. This child will help restore your faith in mankind again, and again, and again, just in how they treat her.
You will spend the next nine years wondering how you ended up the parent of a special needs child. You kind of get used to it, but at the same time, you will never get used to it. It will be this feeling of constant surprise when you sit back and think about it. How did I get here? How did this happen?
No, you will never quite get used to it, no matter how much you do accept it.
You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you’re not about to let that girl down.
You will find that those three amazing kids you had before her? Are even more amazing than you could imagine. They will show compassion and understanding beyond their years which will make you proud.
But those three will have to put up with so much because of their sister. Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly. Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister. But once again, these three kids will amaze you, for they will never resent that little sister. Be annoyed by her? Oh sure. But in normal ways. Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years. They will let you know that you’ve done at least one or two things right.
That little baby girl? Is going to work so very hard the next ten years to learn things. Slowly, but surely, she will learn things. I promise you, she will walk, she will get there. She will talk too – not great, but enough. Can’t promise you on the toilet training, but don’t give up, she should get there.
You can’t tell right now, but that baby girl’s brain? Is going to freak out on her. She will be diagnosed with epilepsy. It will freak you out at first. I promise, promise that it will be okay. It will not stop her from anything. In fact, you’ll find out that things will improve for her after the diagnosis and starting medication. It will quickly go from something scary to something to be oddly grateful for. And then it will just become something that you all will be able to live with. Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.
I promise that.
Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy? Those are over. You will get frequent flyer miles at the doctor’s office. You will collect cards of all sorts of medical professionals. You will learn which blood lab does the best blood draws on children. You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking. You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with. Because there could be more, it could be worse.
Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat. You will put on weight from stress eating. You will lose your mind a little.
It’ll be okay.
Your world will revolve around poop. Your friends may think you talk about it too much. They will have no idea just how much you could speak of it. Don’t worry though, you will discover a small group of other moms obsessed over bowel movements. And you will be able to over-share with them.
Your life is not going to go as you had vaguely planned it. It’s going to veer off in a new direction. People will link you to the heartwarming tale “Welcome to Holland”. You will hate it. That’s okay. You’re allowed to hate it.
You will find out that there are cliques even in the special needs community. So you’ll start your own damn support group. It’ll be called “Who wants to get coffee with me?” It will be great.
You will learn to view adults with special needs in a whole new light. You will see a man in his 50′s happily buying a coloring book and it will make you think of your daughter. You will not cry in the store, but later on, there will be some tears.
You will feel so very alone with this child at times. Sometimes, at home, at night, other times, in the middle of a crowd. You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.
You will feel jealousy, of other people and their children who are developing normally. Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.
Just remember, you were raised to not whine about things and deal. And you do. You will suck it up and deal with it as best you can. And you will do so with a smile on your face. Because crying is never an option.
Well, most of the time.
You will write and blog about this child, and her life. And in doing so, find a whole slew of people out there who say “Wow! I live this too!” and “Thank you for writing exactly how I feel!” Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments. Work on that, okay?
You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children. You will wonder more than once how you ended up on top of a soapbox. Don’t worry, you’ll be okay up there.
You will learn that the guy you chose to marry ten years before? Good choice. That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.
It’s going to be the proverbial emotional roller coaster, these next ten years. You’ll have moments where you’re feeling so high, only to crash back down. But know this -
You will grow.
You will amaze yourself.
You will let go of fears.
You will embrace the now.
And you will love this amazing, beautiful happy child so much, it will hurt. And you will be okay with that.
Oh, and that straight hair? Is going to start to curl. Go figure.
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.
Riiiiiiiiiiiiight.
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?
Um. No.
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.
Smart girl.
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…
This is the ninth installment of the story of our journey with Maura…
I want to pause here for a moment and talk about the school staff, the people in the trenches, those who worked with Maura on a daily basis during kindergarten.
When I think of Maura’s (second) para-professional, resource room teacher and kindergarten classroom teacher, I always smile. These ladies were nothing less than kick-ass when it came to caring for my daughter. If I were to start a school, I’d hire all three in a heartbeat. They saw Maura for who she was, what her capabilities were, never held her back, and always looked out for her. If they weren’t there, I don’t know if I would have been able to send Maura in every day.
The kindergarten teacher especially loved my stories of why we were once again late for school – and we were late enough, that at an IEP meeting, she had us explain why we’d be late a lot, and why it shouldn’t be held against us. Sometimes, it was just so Maura could sleep in (her bus came at 7:30 am, and some mornings, she just wouldn’t wake up.) Sometimes, I’d get Maura all set to go, go to get myself dress, only to come downstairs and find Maura had completely stripped down and I’d have to start over again (dressing Maura can be like dressing a drunk octopus.)
Once, it was a completely ridiculous scenario, where the dogs ran out, I ran out to herd dogs back into the yard, Maura ran out too, running after dogs, me trying to herd all three creatures back into the house…and discovered that Maura stepped in dog poop. She only had one pair of shoes that went over her ankle-foot orthotics. So I had to take off the shoes and scrub them down before sending her into the carpeted school. I thought they’d appreciate that. They did.
The resource room teacher was just everything you could ask for – engaging, caring, always trying out new things to help Maura learn. She put her heart into her work and cared about every one of her students.
And yes, the aide who took care of Maura as if she was one of her own.
There was also the two speech therapists she had that year, two amazing women who worked hard to help get Maura talking more – who had also worked with my other children at various times. I trusted them completely and yes, I’d hire them on at my fantasy school team.
There were others too – the bus driver who was also just the most trustworthy soul, I trusted her with all my kids, and I knew she’d keep a good eye on Maura on the way to and from school. The school secretaries, who made sure Maura got her meds every day.
All these people made the impossible work. Plus those who advise me from the sidelines – they know who they are, and they have my thanks.
I can’t even imagine how much better it would have been with the cooperation of the administration. Because in a way, we were in an ideal situation – a small town where everyone knew Maura, who cared about her and knew her ways. How Maura could walk into stores and people would be patient with us while I got her to use her words. The coffee shop where she’d hand out hugs and get chocolate muffins. My circle of friends who were always there willing to help out. The ballet teacher who felt that of course Maura should be in class with her peers – I really miss that ballet teacher!
There was a lot of good that year. There really was. It’s what got me through the crazy times, and had me apologizing to all the people who had to put up with my ranting about the other things. To them, they will always have my constant gratitude, and I will be singing their praises for the rest of time.
This is the eighth installment of the story of our journey with Maura…
I just had this memory of the Kindergarten Readiness Night, the one where all the parents go to learn about kindergarten. Which honestly? With your fourth child is more than redundant. When it’s your fourth child who has special needs? It’s practically pointless.
I remember sitting in this meeting as they told us all how much our children would grow and learn through the year. How by the end of the year, my child would be reading a little, writing, doing simple math.
I had the good warped sense of humor to laugh about it.
But I also went up to one of the administrators afterwards and said “Listen, as an fyi, this sort of thing could be REALLY depressing to a parent of a special needs child.” It was all basically one big meeting of “Things My Child May Never Be Able To Do”.
And the principal looked at me, all bright eyed and optimistic, and said “Oh now you don’t know! She may surprise you!”
Sweet Baby James woman, have you NOT read her file? – is what I did NOT say.
But this sort of attitude is what I’d get with administrators. The people who at the end of the day, made the final decision for my child. These unrealistic ideas of what her abilities were. My theory is that either they were just ignorant to the severity of her disabilities – which would be understandable at first – or trying to make her more “able” on paper so they didn’t have to invest as much in her. Let’s face it, my kid, and kids like her, are pricey. I can sympathize with that, I’ve got the medical bills to prove it. And you know what? Pretending she’s not that disabled gets us no where.
Anyway, this was the situation I was heading into with kindergarten – a principal who didn’t seem to get what we were dealing with, and a special ed director who wanted to label Maura as high functioning.
A couple weeks before school began, we met with the teacher, new aide, and special ed director to go over things. I knew the teacher, knew she was awesome. The aide seemed nice enough. The special ed director was…well…the usual.
Like when I asked about getting staff trained for Maura’s seizures and the medicines that came with it. She looked at me and said in all honestly, “Oh, do you want them trained?”
Hm. Let’s see. They’d have to administer Valium, rectally, while she was actively seizing…..oh, what the heck, let’s wing it!
No, I didn’t say that. I just said that yes, I would love some medical training, especially as Maura had a tendency to have a seizure at school. (They’re few and far between, her seizures, but the majority happen to occur during school hours – go figure.) She said she’d look into it.
But it didn’t happen before school started. Neither did she procure the item needed for diaper changing (which ended up being one of those comfy cots you find in nurses office.) I was told it was because it took some time to decide on the proper piece of equipment. That finally arrived a few weeks after school started.
Of course, that didn’t matter much because lucky us, we got the aide that had an aversion to diaper changing.
Maura had qualified for this special speech therapy program, the afternoon session, so for the first three months of school, I’d pick her up at noon (kindergarten was full day at that school.) I would pull up every day in the drop-off circle, where Maura was usually wandering about and the aide sitting on the bench texting. It sort of bothered me, as I knew it only takes a moment of not paying attention for Maura to get into trouble – or fall off the curb. Not to mention, she has this tendency still to take off running to meet me (her current bus aide will not let go of her until she knows I can catch her, smart woman.) So every day, I’d pull up very slowly, stopping before I’d get too close - so on the off chance Maura fell into the driveway, I wouldn’t run her over. Because the aide was never within instant reach of her.
Then I noticed this trend of Maura having a full diaper during hand-off. Which is just annoying when you have an hour’s drive ahead of you. Some days, we’d arrive to therapy and her diaper would have leaked everywhere. Or she’d be climbing into her car seat and I’d realize she smelled bad.
The first time, I gave the benefit of the doubt. The second time, I got annoyed. The third time, I wrote a note to the teacher (who didn’t realize Maura wasn’t being changed – changing Maura wasn’t her job, it was the aide’s, and we had all trusted her to change Maura.) The teacher had words with the aide. But between that and not showing up for a meeting until the very end and without an apology, plus the fact that she wasn’t doing her job in other ways…well…they found a new aide.
How I found out Maura had a new aide was when I arrived to pick her up, and a new person was with Maura. The new person got to tell me that she was the new aide. I left a little bewildered and unsure – I mean, surely one would expect the school to notify the parent that their not-really-verbal special needs child suddenly has a new full-time staff member? Is it unreasonable to expect some administrator to call me up and go “By the way, we had issues with the aide, she has been replaced, this person will be tending to your child’s needs from now on.” Is that too much to ask?
Luckily, we went from having the “meh” aide to the “I trust you completely with my baby girl” aide. The super-amazing, spoils you for all others aide. I’d pull up to pick Maura up and the aide would be playing games with Maura, and Maura would be clean and fresh and sometimes, have her hair done up in some fun braids even.
Besides the aide snafu, we started off kindergarten with a seizure on the second day of school. On the playground. Fall over flat, full on short seizure. Honestly, part of me almost laughed when the school called to tell me Maura had a seizure on the playground, as that was the exact scenario I used to the special ed director the spring before when she was contemplating Maura share an aide.
However, having a seizure at school didn’t boost any sort of medical training up the ”urgent” list. No, the school staff got to fly blindly with just the info I gave them (I found medical type forms online that I printed out, plus the pamphlets I made). In October, we had another meeting with the special ed director, and again, I asked about medical training. I was told once again that she was working on it.
It finally happened in November. I had asked for this in May. It took until November. And then, it was only for three – Maura’s regular and special ed teachers, and her aide. I was a bit flabbergasted and asked if shouldn’t there be more people there? I was told the principal couldn’t make it as she had a previous engagement (and by the powers of a small town, I learned that it was a Boy Scout meeting.) The special ed director assured me that it would be a very rare day indeed that even two out of the three staff members would be out of the school on the same day.
The next Monday, the special ed director sent the special ed teacher and Maura’s aide to a conference. Leaving just the one teacher who was trained in what to do.
Needless to say, I was not impressed with how the administration dealt with the seizure disorder issue. I got the feeling it wasn’t taken than seriously, even with her having a seizure at school. I knew nothing about seizures until Maura had one, and they are scary to deal with if you don’t know what to do. I didn’t think it was fair of them to put a child like Maura into staff’s hands, expect the teachers and aide to deal with a seizure, when they hadn’t had any sort of training for it. Let’s be honest, teachers and aides do not get paid enough as is – and now they’re supposed to be nurses too?
Then I caught wind of the fact that two other students who had medical issues had full-on medical plans, with 911 call sheets, plans on how to handle a medical emergency, who would stay with the child, who would call 911, who would do what. All organized and multi-copied and thought out.
And yet, not even suggested to me by any administrator.
I read up on how my child should have a medical plan, and realized we didn’t have one. Or so I thought. Yet when I contacted the special ed director about this, she told me that we did have a medical plan – the little pamphlets I had made – and therefore, we were all in compliance of any laws.
I was a bit “What the hell?” about it all, as I didn’t consider the info pamphlets I made a “medical plan”. But apparently, me trying to share information was considered good enough by the special ed director. I got a bit grouchy over this and stated what I gave them was NOT a medical plan, that I wanted one for my daughter like what other students already had.
Looking back, I get even more annoyed. My daughter spent two years in the special ed programs there, having several seizures at school, on staff who had no training, and no formal plan of action if there’d been a medical emergency. The last year of preschool, I just stopped leaving town while Maura was at preschool, because I wanted to get there asap if she had a seizure. Her medical issues weren’t taken as seriously as they should have been. I know that now. Having had a different experience with Maura’s current school, seeing how seriously everyone took her seizure issues, the principal familiarizing herself with all that they needed to know – I can now see how things weren’t done right with Maura.
Again, it wasn’t fair to the staff who worked with Maura daily, the ones who would be dealing with any seizures she had. It wasn’t fair to me, to keep me from having more peace of mind when she was at school. But also, it wasn’t fair to Maura. She deserved better.
We finally had a meeting to create a medical plan in late January – five months after she’d had a grand mal seizure on the playground.
It was at this point of time I stopped playing nice. I had tried being understanding, I tried seeing it from the other point of view, I had talked the ear off of the best friend who was a special ed teacher, to get her perspective, to see if I was blowing things out of proportion. But I’d had enough.
I wasn’t ever rude, I don’t think so. I just got blunt. To the point. Very direct. I put out what I wanted – which again, was nothing that wasn’t within my rights, things that had done for other students, things within reason. I didn’t ask for an verbal behavior therapist to come in and give Maura extra therapies. I didn’t ask for a trained nurse to be staffed in the school at all times. I didn’t ask for them to rearrange the classrooms so that it was epilepsy-safe, or had them re-do the playground so that it was full of cushions and soft landings.
You know, it’s a shame that four years later, I’m still feeling like I have to defend myself for asking for what I did ask for. That somehow, asking for a medical plan like other students had was being “demanding”. That I was not being understanding enough when there wasn’t any place to change Maura’s diaper for the first several weeks of school (have you tried changing a diaper with the kid standing up? It is not a long-term solution, especially when you’re squeezing her bum into a size 7 diaper that juuuuust fits.) I was asking for basic needs to be met, for her serious medical issue to be taken as seriously as they did all the food allergies (which I have always complied with happily – no peanut butter sandwich is worth another child’s life.)
But I know that the special ed director would probably have a different story, how she tried her hardest and we weren’t understanding enough.
Except we were only halfway through kindergarten and there was more fun to be had.
And by fun, I mean frustration.
But mama got a new pair of kick-ass boots and wasn’t afraid to use them!
Miriam and Maura, first day of school. That little face? Is the reason why I do what I do.
Long story shorter – Maura tried to baptize her iPad Sunday, after taking off parts of the Otterbox. There was much seepage of water into the Otterbox, and the iPad kept seizing up, stuttering, refusing to swipe or acknowledge the touch screen. In an attempt to help it dry out, I took off the handy dandy Invisible Shield, the thing that keeps the screen from getting scratched up.
After some time in ye olde bag o’ rice, plus some freezer time, some defrosting time, and then some plain old laying on a towel in the sun, today, the iPad showed it made a full recovery. No more seizing, stuttering, and swiping worked again.
But I realized I had no Invisible Shield. Which led to an emergency trip to the mall tonight (Ireland does NOT have an Apple store – anywhere – you have to go to Belfast for that. But there is an “authorized Apple dealership” which has proven once again to be useless.)
After wandering the mall in search of a screen protector and realizing they had none, I also realized that I had left the house just as dinner was almost ready.
Which meant I left my children alone with said dinner.
And I didn’t specify that I’d need food too.
So I send the Eldest Boy a text -
Me – “Is there any chicken left?”
Him – “No and I’m not as sorry as I should be.”
Me – “Snot.”
Him – “:P”
You have to give the boy props for honesty. The smart-assery comes from my side of the family, so I can’t even get too mad over that. The smiley face was a nice touch. And I got my revenge in the form of a Maura poop story. Mwuahaha.
(PS – I dug around and found that I did have a spare screen protector, so the iPad is all safe and protected again. And I did manage dinner for myself.)
This is the seventh installment of the story of our journey with Maura…
Where did I leave off? Maura, seizures, preschool…
But eventually, even Maura got too old for preschool. She still hadn’t mastered writing the letter M, but she was turning six, was a head taller than half her class, and couldn’t stay in preschool any longer.
Honestly, looking back, we shouldn’t have bothered with the third year of preschool. She really didn’t make any progress, and she started dragging her feet every morning as we walked from the parking lot into the school. I think it all kind of got boring for her, as she was still trying to meet the same goals – draw a straight line, put the bead on the string, walk up and down stairs without holding onto the railing…
It was time to move on.
And that’s when we realized that things were about to get interesting.
I remember sitting in the Special Education Director (SED)’s office, asking about kindergarten, wondering what would best suit Maura – mainstreaming or some sort of special school.
Her response was “Don’t worry, we’ll meet ALL of Maura’s needs here.”
When I asked what the options were if this didn’t work out, again, she said “Don’t worry, we’ll meet ALL of Maura’s needs here.”
Yeah, I started to worry.
We got to be part of the Guinea Pig special ed preschool class. Lucky us, we were going to be the guinea pig special ed elementary school class as well! I looked at how they hadn’t had a child as disabled as Maura in the elementary school, and wondered just what they were going to do with her. I also couldn’t wrap my brain around the fact that there were NO options – the only choice was mainstreaming.
When I asked the SED about it, she got a bit defensive, saying that this would work, and I should be happy Maura was too high functioning to qualify for any of the self-contained special ed classrooms in the county district. Eventually, I figured out that her idea of “high functioning” was every so slightly more optimistic than anyone else’s.
Then we started going over IEP stuff. And I started to get more anxious about it all. First, when the SED was talking about how Maura could share an aide with another special ed student going into kindergarten. A child I knew well, a lovely child who was a runner and requiring as much attention as my own. The thought of these two children being in separate classrooms, with one aide running between them? It was ludicrous. Why in heaven’s name would you do that to some poor aide?
I smelled Budget. As in, “How cheaply can we manage these special ed kids?”
I put my foot down. Maura needed her own aide. Not a shared one. Yes, it was demanding of me, but a child who was somewhat non-verbal, who had epilepsy, who couldn’t zip up her coat, who was still in diapers, who had no sense of danger and needed close supervision on the playground? Share an aide? No, here I put my foot down. I insisted on her own aide – my one example was “What if she had a seizure on the playground?”
Not to mention, a shared aide’s logistics, trying to take care of two disabled kids without the power of bilocation was dizzying.
The SED relented on the aide, Maura would get a full time aide.
But then, it seemed like everything was getting a bit shorted. Maybe it was because we still didn’t have a label, that there was no example to go by in terms of how much Maura would need. Plus, I was supposed to have all my fears and worries eased by a program that wasn’t yet developed, with a teacher that hadn’t been hired yet, and a blueprint picture of what the proposed resource room would be like for Maura’s resource room time.
All while being fed a line of how ALL of Maura’s needs would be met.
I cracked.
I cracked spectacularly. On the poor little preschool teacher who was just trying to be nice by saying “Don’t worry, it’ll all work out.”
I looked at her and in a slightly hysterical tone, said “No! It’s NOT working out!” or something like that.
She tried to say something nice (but I think I surprised her – I was not one to fall apart in public) and I actually gave her the hand. YES! The Hand! With “No, I’m not talking about it here.”
Somehow, I managed to sob my way to McDonald’s to buy Maura a Happy Meal and myself something to. Then I sniffled my way home and stuffed my mouth with French fries while Maura happily watched some cartoon. The phone rang and the school’s number came up.
See, apparently, I was upset enough that the preschool teacher called the speech therapist who had worked with my other kids and knew me well, told her about my meltdown, and this speech therapist knew me well. Had been through a bunch of IEP’s with me. Had sent me off to Early Intervention with Maura. She knew I didn’t crack under pressure.
I was slightly mortified that she called and got to hear me sob on the phone to her about how I did NOT feel good about sending Maura to kindergarten. God bless that woman, she talked me off the ledge and said “What can we do to make you feel better?”
We went through some things on the IEP. Minor things. Tweaks here and there. I calmed down about it all, but maybe cried a bit more after we got off the phone because she was just so nice and helpful. (She is one of those people in Maura’s life who I will be singing the praises of until the cows come home…and then some…)
Maura’s IEP transitioning her into kindergarten was a bit ridiculous. I think we had 14 people there. Fourteen people. For one little girl. Who the special ed director thought was high functioning. She also kept saying “Well, IF Maura isn’t potty trained by the time school starts…”
I put the kibosh on that. “Let’s just plan for the fact that she will NOT be potty trained, that she WILL be in diapers.”
Yes, I had to argue over where my daughter would have her diaper changed. The SED thought that the bathroom in the classroom wasn’t a good place. Other students might notice then that Maura was in a diaper. No, it was more inconspicuous for her aide to walk her through half the school to the resource room to change her diaper. No one will notice that! (FYI – took one whole day of school for her classmates to notice she was in a diaper. Because kindergarteners, for all their goofy ways, are obnoxiously observant.)
There was also the matter of the school bus. We lived in a semi-rural area, so the bus route was about an hour long. Our house was the last morning pick up, but they’d then flip the route for the afternoons, which meant actually driving past my street to go out into the country and then back, making our house the last stop in the afternoon, meaning the afternoon ride would be an hour.
The SED took me to meet with the bus director, who showed me the harness they would put in so Maura could be seat belted in – a nice 5 point harness that she couldn’t undo. I was great with that part. I then asked about possibly switching the bus route slightly in the afternoon, so they could swing by my house to drop off Maura, instead of having her on the bus for an hour. (Especially as up to that point, no one mentioned the word “aide” when it came to the bus ride – which technically, they’re supposed to provide.)
The bus director balked a little, even though doing this would not take the bus out of its way, and only changed the route times by five minutes. They would be driving past my block anyway, all I was asking was that they’d first turn down my street, drop Maura (and my other kids, since they were there) off, then turn the corner and go back to the regularly scheduled route. Five minutes. Two blocks.
What the response I got was? “Some parents may think it’s not fair that she gets two short bus rides.”
Seriously? Not fair? I told him that if he gets those calls, he could give those parents my phone number, I’d explain how I didn’t think it would be fair if Maura had a seizure on the bus somewhere.
He backed off.
And then I played my trump card of “I’ll be fine with not having an aide on the bus with Maura if she has the shorter ride.”
So they made that minor change to the bus route. No parent complained.
I still hadn’t met with the district nurse about Maura’s seizures, the teachers weren’t trained in anything medical, the aide and resource room teacher weren’t hired, the resource room didn’t quite exist yet, there was no place for diaper changing, Maura still napped half the time in the afternoons,
there was no other option if all this failed…but apparently, we were ready for kindergarten in the fall.
Yes, there was no need to worry, Maura would get everything she needed.
No need to worry at all…
…well, I did still have one of the four best kids in the world. And a new-found self confidence. See, before Maura, I was not really what you’d call “confrontational”. No, I teetered on the edge of “doormat” sometimes. Then I started having children and that mama bear gene started to come alive. I had Maura and it morphed into something more. I came from a long line of strong stubborn women who were always polite, but also didn’t take any crap off people. I was always impressed with them, they were the women I aspired to become. And then one day, I realized, I’d become one of them. Thanks to a husband who believed in me and always has my back, to the older three children who kept me on my toes, and to Maura, who trusted in me in every way, shape and form.
Oh, I was still going to worry about kindergarten – and I underestimated how crazy it would be. I dreaded having to have more meetings over IEP’s and Maura’s issues. But I knew I had this. Failure was not an option.
I read a blog post recently by another special needs mom I know. She wrote about her child’s cheerful disposition, and how that helps shape her outlook on things. I can relate to this – Maura is such a happy creature most of the time, and has such great reactions to things. One Christmas, she entertained extended family with her sheer joy and excitement with every single gift, no matter how big or small.
It’s easy to be positive about life with a special needs child when they have a naturally cheerful disposition.
But something this mom wrote made me pause, and think. And it has been weighing on my mind since reading it.
What she wrote was basically this – Because her child is cheerful in disposition, people want to be with her child, help her child when need be.
It is true, people always want to help out the nice kids, the happy kids, the easy kids. The kids that don’t need as much of an effort from you.
Yet this truth makes me a bit sad.
Maura is an example of the type of child teachers and aides want. First, she’s a girl, and in the world of special education, girls are the minority. I’ve had therapists excited to finally have a girl to work with. Maura is flexible in nature, easy to work with most days, and loves going to school. Now, she does have moderate cognitive disabilities, which means she requires more input, guidance and supervision. She struggles with basic concepts, staying on task, cannot write, can read only things like her name, which she’s seen a thousand times.
At least she’s good natured about it. And for that I am grateful.
She’s the child with the cheerful disposition people are happy to help.
But what about those who aren’t as cheerful? The ones that struggle with sensory issues, who have no way to communicate? The ones who can’t say “This bothers me.” so lash out instead to make their uncomfortableness known? The ones who you have to chase down, who scream and flail?
The ones who people don’t really want to be around, don’t really want to help.
If you’re lucky, you get that amazingly dedicated person who sees the child you love. The one who sees the struggles your child has and is as desperate as you are to help them through that struggle. The one who greets all her students with the same sincere smile, because she cares about them all equally.
Maura has had a couple of these teachers. I’ve seen them love Maura lots, and love her more difficult classmate just as much. I’ve seen them deal with frustrated flailing children and never blame the child for acting out – instead, they say “Oh, it must have been something I did, I missed, I should have known better than to do that around them.”
It is refreshing.
I’ve also seen those who inwardly recoil from the more difficult, less cute child, or give them less attention. I’ve seen Maura treated with less patience when she was the taller, awkward, more needy student than her smaller, more capable classmates. And yes, it stung.
But I know that others have dealt with much worse.
I’m finding it hard to put things delicately – it’s easy to talk about being positive when you’ve had positive experiences. When your child is the one people are bending over backwards to help out. Because it’s easy to help them out, and then you leave with a warm fuzzy feeling for helping said child in need.
Yet in the corner is the other child – the difficult child. The one who tantrums and throws things. Who doesn’t like to be touched, and may be a bit smelly because they’re not toilet trained just yet, or because of chromosomal issues, looks odd or can’t move easily.
A therapist once told me how when you have a child who doesn’t talk, you find yourself not talking to them because you don’t get that input back from the child. I’m guessing that sort of thing plays a factor here – you’re less wanting to help the more difficult child because you don’t get that positive feedback.
Except these are the children who are in desperate need of help, of positive people intervening in their lives to help them out. They need the help too, just as much as the cheerful child. Maybe even more so.
More than the child, their parents need more support as well. They are the ones in the trenches, day in, day out. They are their child’s “safe place” and sometimes bear the brunt of the frustrating day.
And they love their child, as difficult as they are. They love their child fiercely, in a way that most of us cannot begin to imagine. Because they know that their child is one of the ones that are harder for the general public to love, or even like. They’ve been told that their child is just spoiled, needs beating, is being a brat. They’re told that they are the cause of their child’s ill behaviors, that they are bad parents. Their child is the one the teacher doesn’t want to have, the one the other parents don’t want sharing a classroom with their own child because that child might be disruptive.
Their child doesn’t make others feel good. Their child is the one no one is rushing to help.
But I know their child is amazing. Their child is just as deserving of my help as any other. They deserve your help. Their parents deserve your help as well. Being a special needs parent is hard enough – when your child is one of the difficult ones, that makes it harder. You can’t get out easily. It’s very hard to find a sitter. You can’t socialize with parents much. Other parents may steer clear of you, thinking they’re being respectful, giving you space, when inside, you’re desperately hoping for a friendly smile and “Can I help?”
Anyone can help the cheerful child. But those who cheerfully help the difficult child – those are the people who I really admire.
My shirt from Sevenly, which inspired the title of this post. Sevenly helps charities fundraise via some awesomely designed tees. This particular shirt helped Reece’s Rainbow, a Down Syndrome adoption ministry. Check out Sevenly for a new cause every week!
