Underestimating her abilities

It's been a long time, but we've had a lot of big changes.

Her little brother, baby A, is potty training and both kids are big fans of Peppa pig. So, baby A ended up with Peppa pig undies next to his Spider-Man ones. Big A decided that she wanted to wear Peppa pig. And that is when it hit me.

Why was I potty training her little brother and not trying with her? She was showing interest, she has been sitting every morning for at least a year and knows how to use the equipment. Second, she's in a very supportive preschool and is getting ready to move up to the pre-K room where the school no longer supports potty training. They are willing to move her up, but we are doing a disservice to her by not trying her out on it while she has the supports in place.

So, we brought it up with the preschool. I think they were surprised we were asking them to do this after all my discussion on how it might be later for her. It still might, but we should allow her to try. I'm not entirely sure if all my work to convince them we should wait had been too effective because I didn't get the impression the school was entirely happy with my change of heart.

We started her at home over the weekend and there were a lot of messes.

A lot.

But, she seems to get it. At least with a timer, but she's doing it on a schedule. A few times I caught her walking to the rest room, but not going in there on her own.

She's getting it!

For school, it dawned on me that a social story would help, so I tossed on together. The preschool told me that really helped. She would ready it and get to the picture of the little girl with blond hair like hers and try.

I'm proud of her no matter where this goes. She's getting it and I hope we have given her enough time with the right supports to keep getting this.

Don't use the R-word

The R-word. Seriously, you have to have a better term, unless you're really just that incapable of coming up with anything witty. Because The R-word is not witty. It's not funny and it's not something you should use.

It's insulting to anyone who has developmental delays. It should be insulting to everyone. It is an outdated term and the R-word is no longer used in medical texts.

I "hear" it more often than I used to. I don't think it is used more often than it used to be, but I'm more aware of, or at least more sensitive to the true meaning.

I notice it when people use it perhaps because it stings.

It is hopefully unintended, but using that word as a joke is a derogatory way to talk about my daughter. You see, my daughter is blessed with an extra chromosome.

However, the R-word has changed meaning over time. Our language is a living thing and that medical term has become a joke and an insult.

It is no longer a medical term. The medical community recognized what the word had become and removed it from their descriptions of developmental delays.

The negative assumptions of her capabilities are what make it "funny." The things she works so hard to accomplish are summed up as a joke. Even today I am advocating to allow her to be involved in activities with typical peers because the world assumes she is not capable of being part of that world. That's the joke you are inferring when you use that word. The ha-ha, the funny. This is the history of segregating persons with developmental delay from the rest of society.

Don't pull my daughter out of the world because you cannot accept differences.

Most of all, don't use the R-word. Come up with something better.

The rules change once you cross into the world of special education

I volunteered in the big kid’s classrooms when they were in elementary school. It has happened less so in recent years due to the direction our lives have taken. In the past, I was at the school once a week before the younger two were born. I remember being welcome, allowed to help and given things to do. At times, I felt so out of my element, being around the noise that is a classroom compared to the silence that is an office. However, I always felt welcome and I always felt like my kid’s teachers wanted parents to be involved.

Fast forward a few years. There are now four kids in our family. My youngest in school is in developmental preschool. She is on an IEP. During a recent IEP meeting her teacher suggested that I drop by to visit the class. Since there is also a very young one at home, this has not been an easy task to accomplish.

On a random Wednesday, I had taken time off from work for two appointments. One for myself and one for my preschooler. I decided to take her to school and drop by the classroom for 30 minutes. Having been welcomed in the classroom for my older kids in the past, it never occurred to me that this would be a problem. I was more concerned that I had found a moment to visit.

I went to the school office and signed in as a visitor. No one questioned me, no one asked if I should be there. I do have a valid background check on file with the district at my older daughter’s school, so I assumed that would be fine.

After that, my preschooler and I went to wait outside. First the big buses come and then the little buses. The kids wait on the buses for the para-educators and once everyone is there, the entire class walks back to their room. Anna and I followed the class holding hands. Anna seemed pretty thrilled to have me there. She put her coat near her cubby and given the chance, I think she would have showed me around the room.

I told the teacher that I was taking her up on visiting and she left the room. Then the kids lined up for the bathroom. As we were walked across the hall, the principal came out and cornered me.

“What is your intent in observing the class?”

My intent? My intent was to take the teacher up on her offer to visit the class.

She then proceeded to tell me that I needed to give 24 hours’ notice before visiting. I asked for a copy of that policy and she told me it was in the teacher’s contract. She then said I needed to leave. I was escorted back to the office.

I have never felt so unwelcome at ANY of my kid's elementary schools.

I had always thought that my daughter was loved and cared for at school. I had never questioned that. However, now I wonder if that feeling of safety was wrong. My daughter cannot tell me about her day and I have never before had a reason to feel her delay in expressive communication could be a problem. I left her school classroom wondering if there was something being done to my child that the staff didn't want me to see. This is a HORRIBLE thought for any mother to have regarding her child. I shouldn't question her safety at school due to a lack of transparency by the adults in her life.

It is one month after the event and I have not heard one sound from the teacher. The director of special education called me, the school principal called me, scheduled a meeting and then canceled the meeting. Her teacher even managed to be sick during the IEP meeting a few weeks after this event. 

What was their intent in blocking my access to the classroom? What is their intent in ignoring what happened? This shouldn’t have ever happened, but with each passing day it becomes more of a “something.”

Hey, School District!

Last night our district held a school board meeting. A segment of the meeting allows audience members to address the school board. This is what I told our school board.

Good evening 

I am here to talk to you about inclusive education at the preschool level. 

My husband and I have four children. My oldest son is in middle school, my oldest daughter is in elementary school, and my 3 year old is in Preschool at a different Elementary. My youngest is not yet in school.

Anna, my 3 year old, is blessed with an extra chromosome. She has Down syndrome and she is a fire cracker. She is in the developmental preschool program at   elementary. Her teacher really shows so much love for the kids and we know she is in good hands while she is at school. Anna lights up when she sees her bus and is excited to go to school. 

When I dropped her off at school a few weeks ago, I watched as all the big kids flooded off the buses and onto the playground. Then the kids on the little buses were escorted to their classroom. I know there is an age difference between my daughter and the kids on the playground, but what a missed opportunity to have kids together at something that is just such a normal, everyday thing as playing on the play ground before school.

This event caused me to look at Anna’s schooling differently. 

It is one of the reasons I am here tonight.

When Anna was too young for school and both of my older kids were in the same elementary school, one of the kids came home from school and asked me, “Where are all the kids with Down syndrome, mommy? Will Anna be allowed at my school?”

I didn’t have an answer.

I volunteered and went to events at the kid’s school. I looked around and there was not one child like my three year old in the school. We started to seek out local groups that we could take the kids to that involved kids their own age who have Down syndrome. I needed my kids to know that Anna was ok. Finding these groups was really good for my kids. They went to one event and watched movies with some kids. They have a lot of the same interests, likes and dislikes. They are all just kids.

This is our normal, but it shouldn’t be the abnormal. I shouldn’t have had to seek out situations for my kids to be around kids who happened to be blessed with an extra chromosome.

I want my kids to be in a world that welcomes them and I want them to be in a world that allows them to participate with the rest of the world. I want this world for all four of my kids.

I want both my daughters to go to school with the kids down the street. I want my kids to be in the same school if possible. I plan for a world that encourages all four of my kids to go to college and the opportunity to fully participate in the community.

I want my kids to learn to take care of themselves, to reach for the stars and to stand up for others.

Tonight I am giving you a copy of the recent joint Policy statement on inclusion of children with disabilities in early childhood programs. by the US Department of Education and the US Department of Health and Human Services released in September of 2015.

The policy statement outlines that districts should “Strongly communicate inclusion as a shared responsibility and a top priority, and demonstrate a commitment to inclusion through policy changes and appropriate resource allocation at all levels.”

Meaningful inclusive education needs to happen.

I am going to read you a segment from the IDEA’s Least Restrictive Environment Provisions. I know I am likely preaching to the chior, but I want you to think about these words:
(IDEA’s LRE provisions are found at §§300.114 through 300.117.) Each public agency must ensure that—

(i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are nondisabled; and
(ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. [§300.114(a]

As a district, we can make a difference and we need to look at what we can do together to bring this population into the classrooms with other kids.

A recent Dutch study published in June of this year in the Journal of Policy and Practice in Intellectual Disabilities outlines that people with Down syndrome with lower IQs in inclusive settings did better than their counterparts with higher IQs in segregated settings. The data shows that being part of the classroom with typical kids, kids did better.

One of the barriers to inclusion is the fear of a negative impact on typical kids. What’s really cool is the data shows this is not the case. Many studies show that an inclusive education classroom actually benefits all students.

A 2001 study states:

“In the area of academic progress, Waldron, Cole, and Majd (2001) report that more students without disabilities made comparable or greater gains in math and reading when taught in inclusive settings versus traditional classrooms where no students with disabilities are included.”

A 1998 study states “Further evidence for the positive effects of inclusion on students without disabilities is reported by McGregor and Vogelsberg (1998). They found:

• inclusion does not compromise general education students’ outcomes 
• typical peers benefit from involvement and relationships with students who have disabilities in inclusive settings, and 
• the presence of students with disabilities in general education classrooms leads to new learning opportunities for typical students.

Inclusive education is a huge benefit to all students, not just the students receiving special educational services.