Tuesday, September 5, 2017

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.

Wednesday, May 17, 2017

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.

Wednesday, April 5, 2017

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.”