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.

Preschool blues

We have made the decision that Anna should be with kids her own age who are neurotypical. You would think this would be easy to find, call a few local preschools and just sign her up, but it isn't.

The moment I mention that she has Down syndrome, I suddenly have to prove that she belongs there. If it's in person, there's hand ringing, or the standard, "I don't know if this will work out..." These preschools who list "inclusive" on their web pages are scared to death of having to actually follow through with what inclusive means. Or, perhaps they don't realize how exclusive they truly are.

We went through the search for child care a few years back and it took searching high and low to find a day care that not only would take her, but wanted her there. You can tell. You can tell when the provider is scared and you can tell when they think Anna is the problem. However, we found one that not only wanted her, they embraced her.

This was not an easy thing to find. The search began when she was 17 months old. She had just had her G-tube taken out a few months earlier and was still learning to eat orally. Her primary source of calories was liquid. She had limited core strength and needed side support in chairs. She wasn't really climbing, but was walking, just walking. We thought we had found one in a great church day care, but I brought her in for her first day and they walked us into the infant room. The next oldest child wasn't even rolling over. I left her there, because I felt I had no choice, but I bawled in the parking lot.

They told me they couldn't handle her in the room with the kids her age. What's to handle? She was on a bottle which she held herself, but they didn't want to even try.

On the third day, I said enough, and picked her up. She had gotten sick at the day care and when I called a few weeks later they let me pull her out and told me to forget any fees for the month. I think they were glad to see her go and the problem family was gone. They were able to go back to thinking they were inclusive and pretending that they welcomed someone who works a little harder to learn skills.

We found a home day care, but that also wasn't working. They were not staffing the rooms. Every time I stopped by during the day, it was one worker and no other staff. She kept telling me this was not normal, but it was consistent. Anna came home with massive bites on her.  We were on the search for something that was safer for her.

We finally found a center near my office. At this point, I had interviewed and visited 20-30 day cares. I walked in, assuming more of the same, and asked the director if she would allow Anna in the room with kids her own age. She looked surprised and said back to me, "Why wouldn't we? Yes, of course." I think I cried in the office.

Anna did really well at this preschool and day care. The staff found a high chair that allowed Anna to sit at the same level as the kids at the table for meals and brought it into the room. Within four weeks, Anna had figured out how to sit in the big kid chairs and the high chair disappeared. A few weeks in, I was picking Anna up and one of the room teachers told me to hide for a second and watch. She was explaining how they were trying to figure out which kid was helping Anna get up onto the play structure when they finally saw that she had figured out how to get up on it all by herself. I watched my little girl, who just recently learned to walk, climb up on a play structure and go down the slide. It was magical.

The gains in her skills just being around the other kids her age cannot be quantified. There was no PT service, no OT service, no magic therapist that led her to make such big gains in skills as what she learned from the other kids. She started to eat traditional foods, watching the other kids eat lunch, she wanted to try it. This was huge! We finally were able to back off on formulas and start to push real food. This was not the feeding therapist, it was kids showing her what to do that helped her.

Anna started developmental preschool right after her 3rd birthday. There are no peer models in her room. She had started potty training at the day care and this seemed to come to a stop in developmental preschool. Words stopped, big skills stopped emerging.

We put her back on the wait list at the preschool/day care that had been so good for her and I returned to work. A spot opened up this September and we made the decision that a truly inclusive setting is best for Anna. We decided that Anna's best setting is with her peers and decided to pursue what it would involve doing her therapies without attending the preschool program.

Of course, when I called the school district, they are not willing to bus her for her therapies because the preschool is just outside the district. So, all her therapies end or I have to leave my job that I really enjoy. I have long ago written off Anna's SLP at the school as useless when she told me in an offhand comment that Anna would never speak. However, her fine motor skills are still behind. I worry this will be what blocks the kindergarten teacher from welcoming her. And how will we manage her orthotics?

I've called preschools within the district and we are back to proving Anna should be allowed to be there. I have to provide a copy of her IEP to one preschool so they can analyze if they think she would be a good fit. Would they ask for that level of scrutiny from any other child who has an IEP? They also told me she must be potty trained. I brought up that this would be an ADA issue and that didn't go over well. The thought of going through the search, the depressing, search, again, is hard to stomach.

Someone's ability to welcome my child says a lot more about that person as a human being, more than anything they say to me as a person. To welcome someone without question says a lot because it says that they belong in this world. She belongs in this world and I wish I didn't have to fight so hard to prove this. However, someone who welcomes my child is far and few between and the world needs more of that.

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.

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.

The short bus

My little girl started developmental preschool. She takes the little bus. The bus stops at the top of our driveway and she happily climbs on to go to school.

I have my misgivings about school. I like her teachers, I like the care and respect everyone has for us, but I wish she had peer models.

I dropped her off at school once this year and left very upset.

First, I watched as all the big buses came. The kids came pouring out the doors of the buses onto the playground. We were trying to get Anna to her class and were turned away at the door because they weren't ready for her. I asked if she should go to the play ground and I was told, "no!"

We were told to wait by the bus drop off, so we walked back to the front of the school and watched the kids run past us to the play ground. After all the big buses emptied and left, the short buses pulled up. It was like a dance, one group left and the next group came on stage. However, none of the kids got off. They sat on the bus and waited for the helpers. Then the kids were escorted off to their separate classes.

It took everything I had not to start crying for my little girl right there.

My little girl, who I had been asking to be around typical kids missed another opportunity. I didn't see one child get off the short bus and head to the play ground with the other kids. Not even the older kids who were the same age as the elementary school kids on the play ground.

I think about my big kids who asked me where the kids with Down Syndrome are in their school. How can they not think something is wrong with Anna if she's not allowed in the classes with other kids.

I think about Anna and how much she learns being around typical kids. She learned to climb at the day care. She started potty training because the other kids were doing it at the day care.

To be included and loved, that's what we want for our kids, not separated from the rest of the world like there is something wrong with them.

This is Anna. She is perfect just the way she is.