Part Four: What's best for Abby

Abby's mom shares Part Four of their journey using the services and supports of Pennsylvania's Early Intervention program

Have you read Abby's story?

 Part 1, Part 2 and Part 3

Abby 2012 (1).jpgAbby's mom, Amy, shares their story.

When we left off, Abby was off to the Early Intervention (EI) Preschool 4 half days a week. She really did well, although I wasn't so sure she was ready, she certainly proved that she was indeed, ready. She learned so much and began speaking in 2 and 3 word sentences. She loved going to school each day. I couldn't have asked for a better experience for her. 

When the year ended, we started discussing some options for Abby. The EI preschool teacher really felt that Abby was ready for a typical setting, but still needed some of the things they would provide through the EI preschool, such as her therapies—PT (physical therapy), OT (occupational therapy) and speech.

Since my daughter Aleah was going to preschool the following year, we decided to send Abby and Aleah both to the 3 year old preschool program at the local YMCA 3 mornings a week. Abby would also continue with the EI preschool 2 afternoons a week so she could continue to get some more intensive instruction as well as her therapies. The YMCA would be more of a social experience for her and to see how she functioned in a typical setting. 

I was so incredibly nervous leading up to Abby's experience at the YMCA. I did not know how the teachers would feel about having Abby in their classroom or how the kids would react. We asked to meet with the teacher and much to my relief she seemed surprised that we were concerned with her comfort having Abby in her room. She said of course she was fine with it and didn't forsee any problems at all. Abby was 4 years old at the time and she was going to be in a 3 year old class so that it would be more developmentally appropriate for her. 

Looking back on that decision, I think it was one of the best ones we made as her parents. There were 21 children in that class—20 “typical kids” and only one child with special needs—Abby. There was one teacher and one classroom aid. Abby did incredibly well there. She fit right in socially, she knew just what to do from her experience with EI preschool. She knew how to raise her hand, sit quietly, walk in a line and follow the classroom rules. For the most part, she did just that! They had swimming class once a week and Abby excelled. She made lots of friends and felt very comfortable there. The reports I got from her teacher were always positive—that she was a good listener, that she followed directions and that she was just like every other child in that class. It made me feel so good to know she was accepted by her teachers and classmates. 

The only difference between Abby and her classmates was that she was not potty trained. The YMCA was more than happy to make accommodations for that and Abby just wore a Pull-up to school. If she needed to be changed, the teacher would take her in the bathroom and change her. Since she was only in school for 2 ½  hours each day, that was only necessary a few times all year. 

Abby 2012 (3).jpgThat summer, we debated what to do with Abby the following year. Abby turned 5 the previous January so she was age appropriate for Kindergarten. But again, she wasn't potty trained yet and we didn't think she was ready for it. We originally decided to send her to preschool for one more year. We felt she needed a more individualized program than the YMCA, but something more challenging than the EI preschool. 

We looked at various preschools and spoke to their teachers and owners. Some places just didn't seem individualized enough. We needed Abby to get more instruction from preschool this year, not just socialization as she got in the past year.  Other preschools  were not welcoming to Abby. Those were the hardest ones to deal with. I was told that Abby did not belong in one Montessori preschool because it was an academic environment and they were not “equipped to handle her”. This was without ever meeting Abby or asking a single question about her level of functioning. I wrote a very long letter to that preschool owner, which prompted an apology from her. But it hurt nonetheless.  

After much soul searching, my husband I decided that the best placement for Abby was probably kindergarten after all. This was a place where we could be certain her IEP would be followed and that she would be instructed at her own level. If she needed two years in Kindergarten to master the curriculum, then so be it, but we were going to give it a try. The idea terrified me. She would go from being at school for 2 and ½ hours to a full day from about 8am until 4pm. She would be away from me all day. That not only made me sad, it scared me to death.

Once again, as has become a theme in all of this, I wondered if she was ready. I knew I wasn't, but I had to separate what was good for me from what was good for Abby. Always, I have to come back to what is good for her. 

We had ourselves prepared for Abby being in a regular classroom in our neighborhood school with maybe some academic support and possibly a personal care aide. We spent the summer working on potty training and sight words and letters. She did really well with the words. Not so great with the letters and awful with the potty training.

Looking back now, it was probably one of the most frustrating times I have had with Abby. It took a full 5 months before I could say we actually had her potty trained. During the summer, I felt the pressure of wanting her to be trained before school started. I worried myself sick about her having accidents and getting teased by the other kids or being known as the girl who still wears pull ups or pees her pants. 

When the school finally got to testing Abby, they told us that they thought she would be best in a life skills class which was not in our neighborhood school, but across town. Life skills is a self contained class for kids who have pretty significant needs and cannot function or learn in the regular classroom.Abby 2012 (2).jpg

I admit I was shocked. This was not what we had in mind for Abby at all.  As I was trying to take it all in, so many silly, stupid things ran through my head—like, what about riding the bus with her brother and what about being with her friends from the neighborhood, and what about the gluten-free cupcakes that the nurse was going to keep in her freezer for Abby when there was a birthday, and what about the twinkle toes Sketchers sneakers I bought her because I heard every kindergartener at our neighborhood school has to have them, what about seeing her on the risers at the Christmas concert in the gym??!!! All totally not important things, but this was what was running through my head as I was trying to process it all. 

The day we met with all of the teachers I felt like I was going to an interview instead of a meeting. I was so nervous. I changed my clothes 5 times and was pacing around the house. I was worried I would get emotional and cry, and I knew I wouldn't be able to keep quiet.

When we met the life skills teacher, she was wonderful, kind and caring. I could tell she was an excellent teacher right away. But when they spoke about Abby being in a life skills class, again, a  million silly and unimportant things were  going through my head like kids who can't walk or talk, those kids down the hall who no one talks too, who show up in our music class and no one wants to be their partner or sit next to them, that place that every parent I talk to fights to keep their kids out of, the place that is NOT where all the kids go, how was I going to tell my friends that she was going to be in life skills, did this mean she doesn't  have the potential they thought she had, were her test scores that low, she can't even make it in a regular classroom in KINDERGARTEN??? 

We eventually agreed that with Abby's needs, including not being potty trained 100% that she would do her first year of elementary in the life skills class. The life skills teacher told us  all the things they do—go to gymnastics, they take lots of field trips, go bowling, go to the grocery store. She thought these things would sound great and make me feel good, but all they did was remind me that Abby wouldn't be doing what every other kid was doing. She would be doing the 'special” things. Which would be great and awesome for her, but part of me just wanted her to go kindergarten with everyone else and do reading and math and have recess and gym and music. She told me that if 1st grade had a show, they were invited, if 2nd grade had a show they were invited, They were always invited to everything. Translation in my mind at the time—they aren't included IN any of them, but they can sit in the audience. Oh wonderful. They can't be a part of it, because they are so special, but they get to go and watch.

I knew these were horrible thoughts, but I couldn't  stop them. The special ed director said—remember, Abby can be in school until she is 21. She was trying to reassure us in some way, but all I could think was that is right, she won't be graduating with all the other kids—she will be an adult and still in high school. That was not a happy thought. She said the kids will go to gym, art and music with the regular kindergarten classes and I see her being the stranger that just shows up for specials. Life skills, LIFE SKILLS????

I could not get past it in my mind, but in my heart I wanted to do what was right for Abby and I realized that all of my problems with life skills were my own, they were not Abby's problems and if she really did belong there, then she should be there. But I was having a hard time swallowing the fact that she belonged there. Did they really think that little of her functioning that she could not  even make it in a regular classroom in kindergarten??

I knew this day was coming, but I didn't think it would be so soon. I was reassured when they told me that certainly there was chance that after some time she would not need life skills. If it became truly only a learning issue, then learning support and a regular classroom would be the right place for her. I realized that I had a misperception that when your child ends up in life skills, it says something about their potential. It says that your child just is not going to be able to do a regular classroom...ever. I never knew that some kids could actually start out there and then move out. That made me feel a little better. At the end of the meeting, I started to thank everyone and I got overwhelmed and had to leave the room crying. 

Lets just say, I spent pretty much the next 3 days crying on and off and trying to process this whole thing. I felt bad that I felt so bad, which didn't  help either. I was so relieved in some ways that she would have at least one more year of “specialized” care. There would only be 5 students in her class and there would be another little 5 year old girl with Down Syndrome. The teacher was obviously wonderful and everyone raved about her. She hugged me at the end of the meeting and told me we were going to be okay. She was right. 

My husband and I spent a lot of time talking about it. He seemed totally fine with it, but he was understanding of me. He said something that really hit me—he said we have made the hard decision to do what is best for Abby and not everyone can say that. He said that all of my reservations about life skills were about me and not Abby and I was able to separate that and make the right decision. It's not the decision that is going to make me look good at the cocktail party, not the one I can brag about at coffee night, but it's right for Abby and that was hard.  He told me that is why I was so upset. And he would say who cares what other people think, but I did. I wanted to be able to go and brag that Abby was in a regular class with all the other kids. Not so much because I care what other people think, but because I care about Abby and I want people to think the best of her. I want them to know what I know about her. That she is going to beat the odds, that she is smart and funny and loving and she is just like every other kid. I want them to love her and believe in her like I do.

I don't want them to think she's the kid down the road that no one knows because she rides the short bus to a different school everyday. I don't want her to be that kid that comes into our art class and I have to sit next to her and no one wants to be her partner. I don't want to see people's eyebrows go up when I say she is in life skills as they make their judgment that she will never achieve anything. Or for parents in the hallway to look at her and think—I am so glad I don't have a kid like that and feel sorry for me, her mom. That about rips my heart out.

I don't know why, but life skills has evoked all of those feelings in me. It's like the great divide between normal and abnormal. People think Abby will be learning to do the laundry and make soup because she is too dumb to learn to read and write. They don't realize that basic reading, math and writing skills ARE life skills and her academics will be mostly like the regular kindergarten classes. My husband would say, who cares that they are misinformed as long as we know and it's the right thing for Abby, This is true, But I still want to fix those misperceptions. Maybe for me, maybe for Abby, I don't know.

We went to kindergarten orientation in August with 160 other families. I wondered if people were looking at Abby, but it seemed that people were very wrapped up in their own children, which is perfectly natural. Abby's teacher took us to her classroom and Abby jumped right into playing with things and seemed very comfortable. Abby would be paired up with a typical class for specials so I went to listen to that teacher talk to the parents. She was talking about homework and writing letters etc...things I knew Abby could not do. I stood in the doorway looking around at the parents of all the “normal” kids and thought in some ways I wished I was just sitting in there with them. I noted that Abby wouldn't really be a part of their class—she'd have no spot at the table, no nametag, no coat hook in that class. Of course she wouldn't, she wasn't really a part of that class. It made sense, but it was sad too. Don't try to tell me she would be a part of this class. She really wasn't. I needed to accept that.

What I do know and what I have learned is that what is best for our children is not always what feels right in our heart. This is so contrary to everything I have ever thought and believed. I always thought that I would know what was right for my children because it would just feel right. Well, this felt so wrong to me. I hated it and all that it implied. It made me cry and it made me sad and mad. But it was right for Abby.

She is on her 3rd month of school. So, how am I feeling now? Very, very happy with the experience she is having and how she is doing. I feel very comfortable sending her to school everyday. Her teacher is truly a godsend. I have never seen Abby learn so much or be so happy. But I cannot tell you that I don't still cringe a bit when I say “life skills'. I can't tell you that I have given up on the idea of a regular classroom for her.

What I do know is that I don't worry about her one bit all day. I get lots of smiles when she gets off the van in the afternoon. She seems to be learning a lot already. How can I complain about that? That is what I want for Abby. I want her to be happy and feel comfortable. I want her to learn and achieve and feel successful. I want her to feel loved and know that we, her parents, will always try to make the best decisions for her and her alone.

I have promised myself to recall this experience when the time comes to make another critical decision for Abby. I will listen to my inner voice and I will separate my own selfishness from the decisions I make. I will always put my children first.

 

 

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