All us moms out there who have children with developmental and/or mental disabilities deal with inclusion on a daily basis. Will our child be included in the neighborhood, at work, in public, and at school. At school inclusion is also known as “mainstreamed” and if your child is truly mainstreamed the way parents invision it is like getting the golden ticket.  But are our kids truly mainstreamed?

The following is Lily’s experience with being mainstreamed. I will give you a little of my background so you might have a clearer understanding of our situation. I volunteer for different groups that advocate for individuals with disabilities. I also work with individuals with disabilities, some that are going through the school system right now.  So I hear stories, lots of stories. I feel like I know the laws when it comes to the school system and I have given advice to several parents. I am a qualified surrogate parent and have sat in on other student’s IEP’s (Individualized Education Program) meetings. ALL students with learning disabilities should be on an IEP or if needed a 504. Okay back to Lily’s story.

Lily started off in early intervention when she was still in the hospital! They would come and do compressions on her feet and roll her around on a ball. That was followed by OT’s and PT’s coming to our home and eventually Lily going to playgroup. Then came preschool; really shouldn’t that be an easy thing? You put your three year old in a local preschool 2 morning s a week. I paid big bucks to put my boys through a private preschool. I wanted to do the same thing with Lily. They didn’t want her. What!?! Are you kidding me? She was a very cute three year old girl! She could walk; feed herself, color, use scissors. Oh she wasn’t potty trained. Well, she wasn’t the only one not potty trained! The other reason they gave me was that she couldn’t go to more than one preschool at a time and Lily was going to be attending the “special needs” preschool. In Utah if you don’t follow the states “Special Education Rules”  you risk the chance of losing your child’s services. So whether the parents feel like their child is ready or not the child should start preschool at 3 and then transition into kindergarten at 5 (must be 5 by September 2).  Lily ended up just going to the special needs preschool. She loved it! She liked the other students, she liked riding the bus, and she liked the teachers. Lily was happy.

On to kindergarten and I was ready for a fight. As parents of children with disabilities we share our experiences both good and bad. You hear a lot about standing up for your child rights, don’t take less, your child deserves better. Up to this point I had heard mostly horror stories of the school system. The schools weren’t doing what the parent wanted for their child. The parents of course have higher and different expectations than the schools do. The schools are overcrowded, understaffed, underpaid, and not trained to take “a child like that.” I have to admit I was scared and feeling overwhelmed. I wanted to do what was best for Lily and to tell the truth at that point I also didn’t want to let ‘my community’ down by settling. I remember going in, on the advice of the preschool teachers, to focus more on the social and not the academic. When the principal asked me what I saw in Lily’s future I said “college” of course she’ll go to college others with Ds did so my daughter will. The principal looked at me like I was crazy.  I wanted to start off slow in kindergarten though and I would be happy if she were accepted and learned some social skills (yeah right social skills in an overcrowded school room of 5 & 6 year olds!) academics would come. This time the teacher, KAREN WARWICK, looked at me and said in my kindergarten class my students start to read, so we will work with Lily. I had not known that Karen had on her own bought a book on how to teach a child with Down syndrome to read.  Lily had a fun aide, Karen talked to the class about Lily’s disability, during the month of October (Down Syndrome Awareness Month) notes were sent home explaining more about Ds and Karen set up a donation jar in the classroom for Lily’s Buddy Walk. Lily was treated like the other students, if she did something good Lily was told, and if she did something wrong Lily was told what she had done wrong and was disciplined just like the other students would be. Mrs. Warwick also came to one of Lily’s soccer games on a Saturday! Let’s just say kindergarten was a really good year.

I don’t remember much about 1^st grade although it was not very productive and that’s when “the behaviors” started. Lily wouldn’t sit still. Lily wouldn’t listen. Lily was distracting. 2nd grade the teacher tried so hard to include Lily and she knew Lily was smart enough to get away with a ton of things. Lily was a cute little manipulator! I remember we had taught her to tie her shoes back in kindergarten, but Lily could get a substitute or visitor to tie her shoes all the time!

It was after Christmas break in 2^nd grade when the real changes started. The other students changed. They were passing Lily by. Lily was being left out more and more and being told on. “Lily did this,”  “Lily poked me,” “Lily, Lily, Lily…”

3^rd grade disaster! Brand new teacher – like 1st year teaching teacher, she was clueless. Also, a witch for a resource teacher, she even looked like one (this was the third resource teacher since Lily was in kindergarten.)  She didn’t want Lily there plain and simple. She didn’t want to modify Lily’s work for her and asked the aides to do it (an aide actually quit because of this.) She also told the aides to write down everything wrong that Lily did. The students were by this time ignoring and walking away from Lily. I will never forget the morning that Lily and I were waiting with the other students for the bell to ring when Lily went up to one girl and started talking to her and then another girl joined in. The two girls wouldn’t even acknowledge Lily. They walked away from her leaving Lily standing alone. She came up to me and told me she wanted to go home. She had for some time been saying she didn’t want to go to school. I finally understood why. “The Meeting” was called. They no longer wanted Lily there. The school that all 3 of our sons went to, the school where I was the PTA president and a substitute teacher at didn’t want my daughter.  They wanted to send her to a “self contained” classroom! That is like the dirtiest of dirty words in our community. 

We moved Lily to the self-contained classroom (according to Lily her old school “kicked my butt out!” – her exact words, not mine). This after we went and met the teacher, observed the class, and let Lily go and participate one day.  The students in the classroom surrounded her, hugged her, welcomed her, they wanted her to stay and play and eat lunch with them.  They accepted her for who she was. And something that had never happened in the regular classroom, the very first week she was there, she did math, and was told to work on her computer program BY HERSELF. Lily soared!

Lily is now in 6^th grade, still in a self-contained classroom and doing great! I went to her Parent/Teacher Conference yesterday the teacher said she noticed that Lily and two others were too advanced for one math group but not up to level with the other one so the teacher will make a group that will fit their needs!  She will be using a few different reading curriculums until she find one that best fits Lily. Since we moved this summer we had to change schools. I was so apprehensive about this last year of elementary school for Lily but I quickly learned that I have nothing to worry about. Lily’s teacher Jennifer Frazee received an Outstanding Educator Award last year.

As far as social skills and learning from typical students, no thank you. I love the feeling I get when I walk into Lily’s classroom and feel the warmth from her peers. One girl came up to me yesterday and stated quite frankly that Lily thought she was the boss of things. I replied yes she does that at home too. That was that, they still play house together at recess and eat lunch together and will continue to  like each other.  I don’t have to worry that she will be put in a corner and left to color or sat in a desk and left while the others go on field trips. The typical students in the school know that these classes are for students that need a little more help. For the most part they are understanding, they are kind, and they want to help.   

So, to mainstream or not to mainstream? Years ago I would have pushed and shouted for mainstream because that is what our community tells us to do. Today, I say do what is best for your child, whether it is being mainstreamed, self-contained, or home-schooled . My child is thriving, she is learning, she is happy. That is far more important to me than doing what is right for my community.

Ryker (our 53 pound baby lab) somehow managed to get himself in Bunny’s cage with Bunny.

Bunny is a little unnerved but unharmed.

Calvin

Grizzly Adams

 Bunny

 Well we added a few more…

Please meet

Cooper

Cooper is actually Henry’s girlfriend Brynn’s dog. Henry bought Cooper for Brynn, but Brynn’s parents said Cooper couldn’t stay at their house. We have had Cooper since the middle of July.

Please meet

Lucy

Lucy is Lily’s cat, but is sleeping on Brynn who is owner of Cooper. We also got Lucy to be our new mouser because Calvin is 17 years old and doesn’t play with mice anymore.We got Lucy on Monday, Jeff’s birthday.

Cooper and Lucy get along very well

Yeah we aren’t done yet…

Please meet

Ryker

Ryker is Kenny’s dog. We got him this morning and then Kenny left for work! Ryker will be Kenny’s companion dog, right now Ryker is still a puppy. Lord help me…

The three babies get along well together

Ooooooooh, you want to know how the babies get along with the adults!?!

Grizzly is trying, he is much younger than Calvin so has a little more patient. He is also slightly jealous, but we are including him as much as he wants.

Calvin doesn’t like anyone of them and lets them know

 every

 time

he

sees

them.

We just let Calvin sleep, eat, and enjoy life as much as possible.

“MOM, YOU’RE MAKIN A MISTAKE HERE!”

Interview questions asked of Lily October 2008

Do you have a disability? No
Do you have Down syndrome? Yep I do
What is Down syndrome? Me
Is Down syndrome bad to have? No

At her birthday dinner this year she said Ds was bad to have. She is growing up and realizing she is different. My heart aches for her, but I have to be strong and show her how wonderful and unique she is.

I took the following right off Kristen’s blog today.

I don’t have Down syndrome all the time…
By: Dave Hingsburger

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often:

We’d just sat down for lunch when we both heard that pronunciation of the word, ‘Mother’ that communicates so much. ‘Muhhhhh-therrrrrr’. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn’t she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she’d had that led to this arrangement? They had been standing arguing and just before she moved again towards the court, he said something that had a profound impact on me as a listener and she as a mother.

‘Trouble is you think I have Down Syndrome all the time and I don’t,’ he said with real frustration.

She stopped again, ‘What?’

‘I only have Down Syndrome sometimes, when I’m learning something new or if the words are real hard. I don’t have Down Syndrome the rest of the time when I’m doing what I know how to do.’

‘And you don’t have Down Syndrome now?’ she asked.

‘No, I know how to get my lunch, I buy my lunch at school all the time. I don’t have someone with me all the time you know.’ he was frustrated, he didn’t even realize he’d said something of real importance, to me and to his mother.

‘So,’ she continued looking at him hard, ‘you don’t feel like you have Down Syndrome all the time.’

‘No, most times I don’t even think about it,’ he said.

She said, her tiredness seemed to be gone, ‘Go ahead, we’ll find a table after we’ve got our food.’

They disappeared from view. Joe and I looked at each other. I said to him, ‘That kid should teach classes to parents of kids with Down Syndrome.’

Thanks Kristen, and regarding Piper, just you wait. I remember taking Lily to look for shoes and we had a stand off in the store; she wanted heals I wanted flats. We walked out with nothing, then she wanted flats. Too late.

As I think about the journey she has taken me on I smile. There is also some heartache; because of Lily we have met some incredible people, but unfortunately some of these individuals time on earth is much shorter than all of us would like. We lost Carly 3 months ago and just recently Kristen. There are also those individuals like Jaxson and Parker that live their life with amazing fight and spirit. And I don’t want to forget the parents! I am so much stronger because of the battles they have fought for their children. I now belong to this remarkable family. It’s worldwide. We can all relate, laugh, smile and cry at the very same things. We know what each other is going through. I think of the lessons that Lily and these remarkable individuals have taught me along the way and I feel so blessed. I think it is so unfortunate that not all human beings can see the value in my child and so many other individuals with disabilities. They are truly missing out.  

So in honor of Lily on her 11 birthday here are 11 reasons why I love her so very much.

1. She makes me smile every day.
2. She makes me laugh every day.
3. She amazes me with her positive, upbeat attitude toward life.
4. She still likes to “snuggle up” with me and watch an old movie.
5. She has introduced me to wonderful old musicals and movies.
6. She has taught me that it is okay to sing out loud and out of tune.
7. She has taught me that it is okay to break out in dance in the middle of a store.
8. She has taught me patience.
9. She has taught me acceptance.
10. She has taught me that individuals with disabilities are just as normal as the next person.
11. She has changed my life for the better.

Here are some pictures of her day. Of course the batteries ran out as she was opening presents!

We started out by going to Skyler’s brother’s farewell for his LDS mission. Lily and Skyler haven’t seen each other most of the summer, so it was a sweet reunion with promises to get together Tuesday for Lily’s birthday. Oh yeah Skyler is a real hero read this!

When we got home we had our first visitors from our new ward. To my surprise Lily’s adoption worker, Mark Duke and his wife, came by to let us know we were in the same ward! I had called our new bishop yesterday and told him we had moved in. The bishop then told the men in Priesthhood meeting today. I guess the bishop read my name and then Jeff’s. At that point Mark was hoping it was us, then the bishop read the boys names. Mark spoke up and said he had forgot someone and said Lily’s name. The bishop was surprised, so Mark told them of our wonderful adoption journey. Lily doesn’t remember him, but he still has her pictures up in his office. I was so happy they came by. I think this is going to be a good move for us.

Tonight was the first night we sat down together as a family at our new dining room table and had a home cooked meal. Today was the first day I actually used the stove!

Here are a few pictures of my kitchen and Lily’s playground. We have got all the wallpaper down upstairs and were prepared to start painting when we realized there was no insulation on the outside walls, so we will have insulation blown in before we start painting. I am blessed to have a contractor as a hubby!

First time in 19 years I have had a full size oven! Now I have two, one upstairs and one downstairs.

We keep Bunny in the playground.

Haven’t gotten around to putting the food storage rack downstairs yet. Give us a few more days…

Mark Duke also told us that the girl next door, who also has Ds is just about Lily’s age. It’s been a good day.