Growing up, I was a big fan of public school, happy little nerd that I am. Generally I had good teachers that encouraged a life-long love of learning as cliché as that may sound. Going to school was fun for me. There were plenty of subjects that I wasn’t naturally good at. I worked hard anyway. For me memorizing when something happened wasn’t the point of how I was spending my day. Learning how to function and contribute in a community and how to find an answer when it was relevant was the point. I’ve always felt that way (perhaps if I had been good at memorization I would have felt that was the point) and it’s a value I still hold for my children.

All of my children. And so far, they haven’t disappointed me. These girls, they are curious and bright. Busy and friendly. Determined and happy. Zuzu is in her last week of kindergarten and as I think back to a year ago and my fears that her over-confidence, her boundless energy and her chatty nature would not serve her well in a structured classroom setting, I’m pleased as punch to lay my worries down and say that I was wrong. Her interactions with her principal this past year really did have her believing that the principal is her pal. She thought he was handsome, friendly and giggles that he wore a tie that matched her socks one day. He gave her an award for being a P. E. Superstar that included a school TV cameo and a fresh new jump rope. She is sad he is retiring and I’m glad she is comfortable with the authority figures in her school. Her teacher this year was everything a kindergarten teacher should be- warm, energetic, loving and clever. When Lovey had lunch with her at school a few weeks ago she excitedly got to choose two of her besties to join them at their special table. Lovey got to sit first hand amidst this giggling generation of girls who laughingly explained the meaning of the word infinity and then moved on to explain to him how lucky our family is to have our last name be a compound word. Indeed. She has blossomed socially and academically. She’s learned to read and to write, to color and create, to lead and to follow. And to be a bit more detailed and subtle in explanations to her parents in all things kindergarten. Which in case you didn’t know is no longer fat crayons , snacktime, cubbies and nap mats. It’s running the mile to pop-rock, explanations of onamonapia, regular use of an Ipad and understanding that sometimes President Lincoln gets shot because not everyone believes in his views. Indeed.

They learn so much so early on now. Never mind are you smarter than a fifth grader, take a peek at the k4 progress reports and you’ll suck your breath in I’m sure. I know I did. We’ve been in discussion with the school district over the most appropriate placement for our Quail this next year. Discussion is the nice word for it. And for the most part appropriate. In our school district there is no public preschool. Only preschool for children with significant disabilities in the k3 year. And in our area, that setting is a self-contained classroom in a little town about 10 miles down the road from where Zuzu goes to Elementary school. I’ve been aware of this fact for years.

When the Quail was 2 we started discussing with Jodie (our EI) what public school would look like for her. I have very visceral memories of the feelings I had during these conversations. What was coming was not what I wanted to hear. Yet, I really didn’t know what we could do about it. I’m no homeschooler. It doesn’t go with my personal belief system about the purposes of public education and community and people with disabilities. Yet, I’m generally a rule follower. A rule enforcer by tendency and profession, just ask my co-workers and kids. I also expect rules that are put in place to be up to date and relevant to current understanding and to treat people fairly. Not fairly like we all get a foot high step stool so we can reach the sink. Fair like, those who can stand on the ground and reach the sink do, those who need the step stool to reach the sink have one available and those that are able to help you get your step stool do help.  

So here we are, in a small fairly rural town with well-meaning professionals that have set up a system where people like my child go “there” to get an education. Problem is, I was educated that people like my child should not go “there”, they should come here- with everyone else’s children.

So every few months we would have this discussion with Jodie. Mentally I would put it on the backburner and go back to the more pressing issues at hand, like birthing a new baby, hiring and training students to work with the Quail and answering Zuzu’s unending questions about why, where, when and how.

Then the time came to make the referral to the school district and I reminded myself that if the Quail didn’t have Down syndrome, she wouldn’t be offered a public school class at age 3. So that first spring that she was 3, the Special Education teacher met our family and came to see the Quail at the private preschool/daycare we have always used. Speech, occupational and physical therapy were started with the school and the Quail’s days began to fill up. Over that summer, while I was in a new baby mental fog, the school added a self-contained pre-school class at the town down the road and recommended that the Quail attend two days a week along with the therapies she had been receiving. It was an uncomfortable transition for us mentally. We were going to be sending her off on the short bus to a segregated classroom- exactly what we didn’t want. Our option was to go or to refuse services and frankly- the Quail was happy enough. Each morning she would chant and cheer her teacher’s name and grab her purple crocs and Dora backpack and head for the door. She would have preferred to go everyday. The school was wonderful to work with. I pushed my fear of the bus on hold by driving her there myself. She did ride the bus back to her private daycare as I hid my head in the sand. When you are a working parent, sometimes you have to make accommodations that you aren’t crazy about, but that aren’t really doing any harm.  The teacher’s came to gather the Quail from the ca. On the days that I was running late, the principal would greet us with his coffee in hand, bow-tie neatly tied and a smile on his face as he leaned down to offer a hand to the Quail and off she would go. The team worked well with the Quail and she responded in kind. They worked with us to accommodate her with the resources they had. When we remain concerned about the slow pace of her speech progression they added another session per our request. When we remained concerned they assisted us to get an assistive technology referral. When we asked for more details about the Quail’s progress they provided extra notes detailing her work. We talked with the teachers at drop-off about how she was doing and we worked on our speech via song and conversation on the way to school along the pretty country road. All-in-all the year passed by without concern.

Then this past year, my fog lifted, Lovey asked about the recommendations for next year and our eyes widened. We made a decision to meet the regular k4 teacher and see her classroom. Our SPED said she would coordinate the meeting. A few days later she called back to say that we needed to reschedule so that an administrator could join us as the school had questions for us. Lovey asked after the questions and we were told it had to do with the thickened liquids that the Quail requires. We agreed to reschedule and the day before the meeting I again called the SPED to ask if there were any other questions the school had, so that we could be prepared with what information they needed. We were again told that the question had to do with her thickened liquids.

I’m cynical enough to not have believed this. Lovey had put on the k4 application the need for thickened liquids though, so it sounded reasonable. We decided to bring the Quail along with us figuring her charm could only help.

I should stop right here in this tale though and mention that we have mentors for going through this IEP business. And if you are reading this and wondering about how the education system might work when your child with Down syndrome ages in to it, I will say this in a weary tone- question what you hear and use this time to educate yourself in how your specific school district operates and seek out other families who are in the situation you want to be in. Because this school business, it is not one size fits all and unfortunately- the education plans, they aren’t entirely individualized despite their acronym. If you are comfortable with what the school district recommends for your child- then you will have an easier time with this transition. If on the other hand, you have wanted something different for your child- be it a more restrictive environment because it makes you feel your child will be safer, or a less restrictive environment because you feel it will help your child thrive- then that is what you should aim for. The key is you know your child and you also need to know your rights. As a parent, it will be your job to advocate for your child’s rights- whether those around you are in agreement with you or not.

So we entered the meeting and we could literally see the organization that had gone on before we were invited in under a specific pretense, down to where we were instructed to sit with the principal at one end of the table and the SPED teacher at the other. We brought along our EI. She’s known the Quail since she was 8 weeks old and is a separate set of eyes that regularly witnesses her interactions with her typically developing peers at our private preschool. She of course, sat next to us. The regular ed teacher sat across. We began the meeting with our family’s intent for the meeting- questions about the structure of the k4 day, the classroom, the curriculum. Partway through the discussion our SPED teacher spoke up and indicated that while it was still her recommendation that the Quail continue this next year in her self-contained classroom at the neighboring town’s school, if we were really wanting the k4 classroom setting for the Quail she could arrange for her to go to the k4 classroom in that school so that she could continue to keep an eye on her and monitor her acclimation to this larger classroom setting. We asked a few questions about what that would look like and then turned our attention back to the k4 teacher. The principal then interrupted our discussion,

“Look, I don’t mean to offend, and I don’t know how else to say this, but we all know that the Quail is in the SPED teacher’s classroom for a reason. If she were my child, I would trust the expert’s recommendations and her recommendation is that the Quail stay in her classroom at least another year.”

Strangely I felt a calm settle over me as he spoke the words I had been warned someone would- that they were the experts, that they know what’s best, that they are trained in working with children like mine.

I looked at the principal, who was not my pal and replied, “With all due respect, she is a wonderful special education teacher. What we are looking for right now is a regular education environment. The Quail is currently in a typical preschool with a larger student to teacher ratio then the regular classroom here and handles herself just fine. She has shown us repeatedly that when we think to teach her something she is capable of learning it. We are not your typical family. I have a master’s degree in social work where I was trained in working with people with developmental disabilities and community integration. We have educated ourselves in Down syndrome and how people with Down syndrome learn. We know that the Quail can be more concrete in her learning. We’ve had therapies at this school and it is the capability of the environment that we know it provides that makes us certain we want the Quail to attend here. It makes sense that while she is working on her gross motor skills in therapy that they be in the natural environment where she would be expected to use them. Your speech therapist this next school year happens to be our private speech therapist. She is very familiar with the Quail’s learning style, her strengths and weaknesses. We are confident in her ability to assist the Quail in her adaptation to this school and frankly speech is her biggest delay. We understand that there is a spot open in the k4 class and that for at least 7 of the 20 children, English is not their native language. The Quail will be comparable with these children in her communication needs, and perhaps even ahead as she has low-average receptive language abilities. Currently her IEP includes no academic goals because she is on par with children her age academically. If there is a reason for her to be in a more restrictive environment, you are going to need to be very specific as to what that reason is.”

The SPED teacher agreed that the Quail was on track academically to date. She noted that her main concern for her in a regular classroom was that she was often easily distracted in her class this past year. She described how she would sit and work with two students at a time and once she had told her what to do and turned away from her, the Quail would often need redirection to finish her table work.

Our EI noted that working independently at the table is a goal we could add to our IFSP and work on between now and the next school year now that we were aware this was a concern. I then asked the regular k4 teacher if this was ever an issue for the other typical 4 year olds in her class. She smiled and admitted that it quite often was throughout the entire year. I asked if that then meant that this would not be an overwhelming issue for her to have and she agreed it would not.

Around this time the principal interjected that they would have no problem meeting the Quail’s needs both individually and legally. The conversation then turned to a continuance of one that we had not previously been privy to between the SPED teacher and the principal over who would oversee the IEP at our homeschool.

A couple of notes of interest about this meeting, as I mentioned earlier:

1. It was organized down to the chairs we sat in. Some of the best advice we received was to not ask a question that you didn’t already know the answer to in an IEP meeting. This proved to be the school’s method as well. It’s important in this environment to know the school’s language. Attend a seminar on IDEA and IEPs. Know the words such as home-school, least restrictive environment, mainstream vs inclusion vs self-contained classrooms, FAPE- free and APPROPRIATE education (note the law doesn’t require them to provide what is best- you are aiming for what is appropriate).
2. Know what you want and have it in writing to remind yourself when you are in the midst of the pressure to go with the flow. Legally, your child has the right to be in a regular classroom with accommodations. They shouldn’t have to earn their way there. That said, the education system is huge, and it is understandable that they would organize their system in a manner that works for the greatest number.  It would have been very easy amidst the SPED teacher’s concerns about the Quail’s acclimation to a regular education environment to agree to have her in either the segregated classroom or the K4 classroom where the segregated preschool class is housed. Their thoughts and action plan were well planned out. From the beginning of the meeting the Quail had the ability and right to be in thek4 class in our homeschool. That option had already been secured and discussed with the Special Education director before the meeting even began. They did not offer that up though. The meeting process is not a buffet where you get to see all of the choices out in front of you and choose which one you think is appropriate. It’s a negotiation. When we expressed our desire for her to be educated in the typical environment with her non-disabled peers in her community, as the law allows for, they attempted to talk us out of it even though we were VERY clear about our intent. They eventually said yes once they saw we were firm in our stance.
3. We all have to work together. Be kind. Don’t assume that the man, the system, the government is out to get you and your child, to hold you back. That isn’t the case. Remember, it was just in the last half-century that children with Down syndrome were regularly kept at home rather than routinely institutionalized. It is even more recent that research and experience has shown how very capable these children are when they are included in typical environments- home, school, community and work. I truly believe that no one is trying to deprive the Quail of an appropriate education. What I know about her and frankly, people like her, is very different than what others trained years ago know. The understanding of a person with Down syndrome’s ability is different. I also believe that what has “always been done” is no longer what is appropriate. We know so much more about how children with Down syndrome learn than we did even a decade ago. And fortunately, the law is on our side. It’s going to take working together to make this work. In the process of learning about the system and the hoops others that came before us have jumped through, I admit in the back of my mind I thought people might be exaggerating that this is a “fight”. Frankly I had hoped that it wouldn’t be. Fighting and confrontation for the sake of it is not my style. Fight might not be the right description, but it most certainly isn’t a given that the Quail or children with her diagnosis will automatically be educated in a regular classroom environment in 2013 everywhere in our country. Even in what is deemed “an excellent school.” This dinosaur of an education system is still adjusting to what our children are capable of. What our generation expects is not how this generation of educators was trained.

So our family is going to mind its manners while advocating for our child. We can’t change the system for all of the children. We can calmly and firmly expect our child to be given an appropriate education where she will learn, progress and be challenged.

How that happens will continue to be a discussion. We’re still learning about inclusion and mainstream. Our family’s preferences aren’t quite the same as most other families in this community that we know. We have been fans of therapy for the Quail since she was young. That said, when we haven’t agreed with the style or suggestions of a particular therapist or the Quail hasn’t responded to that therapist, we have eventually moved on. We aren’t trying to “fix” the Quail, but she likes to be busy, to be learning and be active. She keeps her watchful eyes on her sisters and friends and wants to do everything she sees them doing. We have seen firsthand how when we break down a task for her, she lights up because she is able to then go on to do it more independently. The problem is, our family’s collective brain power isn’t one that automatically knows or thinks how to break down every single thing in life. We rely on others trained in various areas to help us with that. The Quail is a child who loves flashcards and a structured learning environment. She responds to it and engages with her teachers and therapists when she knows what is clearly expected of her, and yes- she is a kid after all- what she can get away with. This transition into the education world is new for us. It is a transition that we are open to and it will be interesting to say the least to see how our district adapts to family’s level o involvement.

 As I mentioned before we have found only 2 other families that have their child included in the regular education environment in our surrounding counties. Two. I don’t believe it is because these other children are less capable than our Quail. I believe it is because it is not what has always been done, and frankly, it is a fight. One that, God willing, will last a lifetime. It would be lovely to trust the “experts” and their recommendations. In our situation though, what they have described doesn’t coincide with our expectations. If it does for you and yours, then that should be your choice and there is no judgment from our family. It is incredibly hard to step out on a limb and ask your child to walk a path that very few have walked before her. I have all the same fears as those families who want a “safer” environment. I know that society at large is not welcoming to children and adults whose faces resemble the Quail’s. People see her features and they already think they know her. They interpret what she does in a way that validates their stereotypes. That, unfortunately, is a fact of life in 2013.

We agreed at the end of that meeting to go home and consider the choices. The educators had some additional questions for the Special Education Director about what it would look like to have their first four-year-old with Down syndrome in this school. You see, those two other families we know, they live in a different town and district. This isn’t something they have done before but we agreed to work together to figure it out.

After that meeting we sent an email to the SPED teacher letting her know that we still wanted the Quail to attend our home-school that her sister goes to in the afternoon regular k4 class this fall. Our IEP meeting was then rescheduled to include our new teachers and allow for some changes to the document itself.

When we received a new draft of the document we continued to have questions about the specific goals we saw. Some of them listed the next year’s goal to be the same as this past year’s goal which the functional strengths and assessment in the same document listed her as having achieved. We asked to have these adjusted forward. We asked to add in a goal pertaining to the attention and concentration concern and to add one academic goal pertaining to math that the teacher had noted the Quail was inconsistent with. We suggested some rewrites to her OT and PT goals to be more specific in terms of what was being measured and how. We explained our need for this quite simply. The Quail needs to have consistent expectations explained to her and if they are working on a goal in the classroom that we will also be working on in private pre-school, therapy or home, we want to be asking the same thing of her the same way. We asked for the afternoon k4 class so that she could still attend the academic portion of her private-k4 class that she will be moving into at our pre-school/daycare this August. This also surprisingly shortens her over all day since Lovey and I both work and we still have a set time we can pick her up at the end of the day. With her going to public k4 in the afternoon, she can go into private k4 by 9am, rather than starting her day at with public school at 7:10am.

I admit our list of questions, modifications and concerns was long. And specific. And detailed. 3 pages long to be exact. The thing is, I read these documents for a living. Lovey is a college professor. We expect to collaborate and be very involved when it comes to our children. Our SPED teacher thanked us for the list. She adjusted a majority of the goals that we asked to either move forward or be more specific. She indicated that in terms of our questions for the k4 teacher it would be easier to just go over them at the IEP meeting and she forwarded us a revised IEP. We were thrilled with the changes. No surprises and I took her gratitude in our suggestions as sincere.

I bought a cheesecake for the meeting. That is not a euphemism. I literally bought a cheesecake and asked the baker to write, “Happy IEP Day!” on the cake. If I had time to back brownies, I would have done that. But with three little ones and more literature prep than we could easily cover for the meeting, store-bought would have to do. When we arrived at the meeting we went to our “assigned seats” and I started setting out the cake, plates, utensils and napkins. I looked up to a chuckle from our SLP. ”That’s a first!” she grinned as I divided up the cake. I started handing out slices to Lovey and Jodie and noticed the tone of the room change as our SPED teacher brought out our list of concerns.

We started down the list and the first few questions about the Quail’s schedule- when she would be pulled from class, a request for a daily communication log between us and the school, what she would actually do in resource class, functional phrases that it would be helpful for us to work on her articulating over the summer were all met with I don’t knows. As I mentioned before, we knew that you should not ask a question that you don’t already know the answer too and we knew the answer to each of these questions would be I don’t know. The purpose of our asking was to make it known that these were issues we wanted a say in and that we would need to meet to discuss them 4-5 weeks into the new school year.

I think I’m a pretty good judge of social appropriateness. Trained as a social worker, I generally watch for people’s reactions and gage my responses accordingly. I know the importance of social niceties as much as the next person. And as personal as these meetings are, I was in professional mode. So needless to say, I was completely caught off guard when the principal from his end of the table suddenly interrupted (not unlike at our last meeting) to scold us. He seemed truly flustered as he blurted out that we were just going to have to trust them to do the job they have been trained to do and that WE were making them look foolish by the minutia of all of these questions we were asking that they didn’t have the answers for.

It stung. Literally. My eye’s stung and my heart burned briefly. I didn’t feel as calm in my response to him as I had the previous meeting, but Lovey said that although my anger showed in my voice I still sounded calm and professional.

I reiterated what he had previously said to us, that this was new for them, that they had not had a child like the Quail in their k4 class before and that while we were clear about that, we are involved parents and our questions are not meant to be condescending but collaborative in nature. It is our confidence in this school’s excellent academic reputation and our experience so far that makes us clear that this is where we want our child to go to school. I reminded him that they had requested a different arrangement from their director if the Quail were to attend and that they had been turned down in that arrangement, that it was their explanation of that request that had clarified that the resource teacher who was now to be assigned, has no experience in working with children with the Quail’s diagnosis and as young as her. I pointed out that we were not offended by their not having answers to these questions and the need to defer discussion to the fall, but rather that we wanted to make sure these issues were on other’s agendas and to be clear that we would be discussing them come this fall- that we had sent our questions ahead of time in a good faith effort of collaboration.

He backed off again, and the discussion and questions continued but I didn’t leave there this time feeling he was on our team. At a later point (yes this was a long meeting) he made a point to lock eyes with me and give me a world-weary warning to never ever give up the Quail’s IEP- that that was where the protection of her rights lie. To be fair to him, he doesn’t know me, us, the Quail or what we know. I’m crystal clear that we need protection of her rights, as unfortunate as that is in this day and age.

So we finished up and the principal had to leave. Turns out this was his last IEP. He’s retiring this year. Others apologized for his tone and we all moved on to share some cake. And I left glad I had brought it. Some victories- they need a bit of icing, and I’m happy to provide it.