Update: Going the Distance for Inclusion

I am thrilled to update the blog with news of Gwyneth entering public school once again, and this time fully included in a first grade co-taught classroom. Over the past year, we have gone to great lengths to make this happen. Last October, I wrote about my frustration and disappointment that Gwyneth was missing out on a typical Kindergarten experience. We had decided to continue to homeschool, but we were also deciding on making some huge changes in our life as a family.

First, we put our house up for sale. We had been working for months to make improvements on the house and clean it out to be ready for the real estate market. We priced it low. We began looking for areas inside Atlanta to live and send the kids to school. We looked at public and private options. We had heard rumors of a public elementary school that was allowed to practice an inclusion model as a sort of experiment for the district. We weren’t sure about the houses in that neighborhood and kept our search broad at first.

We wanted an overall lifestyle change - being closer to Atlanta meant a much shorter commute for Reid so he could actually be home to see the kids on weekdays. We also wanted to be closer to all the great parks and restaurants and communities and medical professionals and events that Atlanta has to offer.

During our house search, many of the areas we looked at checked off most of the items on our lifestyle list, but the schools were always a big unknown. We looked at schools that were “good” because they had an IB program or high test scores or were in an affluent neighborhood. But would a highly rated school be the best place for Gwyneth? Would they push back on including her just as our previous school had done? There were no guarantees and I expected to have a fight on our hands wherever we ended up. So the rumored inclusion school kept popping up in our minds. After we discovered we had a fourth child on the way - due in mid summer 2016 - we narrowed our search from townhomes to houses with yards. This change made it unlikely that we could afford to live in the affluent, “good” school areas.

In early 2016, our house was sold and we viewed some houses for sale in the area of the inclusion school. I decided to go into the school to get some information. The principal welcomed me into her office and explained that every classroom in the school has two teachers: a general ed teacher and an inclusion teacher for kids with IEPs (aka special ed). Because they practice this co-taught model, the student body is 20% kids with IEPs. They also have 25% in the Gifted program. There are Paraprofessionals in the classroom as well, so the overall adult to child ratio is much lower than the district average.

After meeting the inclusion school principal, I also stopped into the front office of the next nearest elementary school. Rather than getting a warm welcome, this principal spoke to me at the front desk and gave me the generic legal-speak responses to my questions about inclusion. I was told “her placement would depend on what the IEP dictates” several times. I realized that any other school in all of Atlanta would have this same answer. Inclusion is never the beginning for a child like Gwyneth. Before she has set foot into the school, she is labeled and segregated with only the promise of some unattainable situation where she could prove herself worthy of joining a regular classroom. How could she possibly show her capability to learn in a regular classroom if she is not allowed to be there in the first place? It seems like everything is set up backwards.

So we found a beautiful house near the inclusion school, purchased it, settled in, had our baby in June and prepared for school to start in August. I was able to visit the school and see how the inclusive Kindergarten classroom worked. It looked like a wonderful situation for Gwyneth. Her little brother Ryker, being five, was ready for Kindergarten and is already taller than his big sister. So when I registered the two kids I asked for Gwyneth to repeat Kindergarten once again. I was still clinging to my wish that she could have a happy Kindergarten year. But the principal pushed back on placing her in K; she had turned eight years old and the principal made me realize that I was wanting to hold Gwyneth back in the hope that she would be at grade level and not behind. So I’ve had to come to terms again with the fact that Gwyneth will always be behind - academically and physically - the other kids around her. We have settled on placing her in First Grade. Today is the first day of the school year.

The school had an open house last week to meet the teachers. It was an incredible feeling to have each of my school aged kids treated the same. We found their classrooms and their teachers and signed them up to ride the same school bus (other schools have separate buses for special ed kids even if their siblings attend the school). Gwyneth’s general ed teacher was just as interested in meeting her and talking to me about her as the inclusion teacher was. They were both so wonderful. It is such a relief to know that Gwyneth will be spending every minute of her day with the same group of kids because she truly is a member of the class. She will go to Art, Music, P.E. and French with the same kids. She will go to the playground and eat lunch with them. She will finally have the chance to build friendships and maximize her learning. I’m really looking forward to a great school year and many more years to come. Middle school and high school will be challenges to take on in the future, but I believe we will be better equipped to fight for inclusion at those schools with Gwyneth experiencing years of inclusion (and “proving” herself) in elementary school.

Happy back-to-school everyone!

Please Take Back Your ‘Special’

For those of you who are parents, I ask you to follow along with a thought exercise. Think of the time when you registered your child for Kindergarten (or imagine doing so if they are still little). Think about the feeling of finding out who their teacher would be and who their classmates would be. Remember how it felt to prepare them for the first day of school; purchasing a backpack or lunch box, finding all of the supplies, and planning how they would be transported to school. You possibly imagined the scene of your child walking into their Kindergarten classroom for the first time and finding their name on a cubby or assigned to a desk. And they would be surrounded by other kids experiencing the same thing. I’m sure many of you worried about certain things, but mostly I believe you were excited for them to accomplish this milestone; this rite of passage from preschooler to Big Kid.

Now imagine someone telling you that your child was not allowed to have this experience. They tell you that your child cannot go to that classroom on that first day of Kindergarten. They don’t tell you this to be mean - oh no - this denial of a basic childhood rite of passage is “for their own good.” It is “what is best.” Your child needs to be in a separate classroom. Your child is different. Your child is special. Your child does not belong with the other children.

I’ve been doing a thought exercise of my own lately. What would happen if I just registered my daughter in our new school district as a typical kid, and didn’t mention a thing about Down syndrome, IEPs, or Special Education? What if she showed up on the first day of school in a typical classroom? Honestly, I imagine that all hell would break loose. They would take one look at her, label her, and freak out. Because she would NOT belong there.

I am tired of thinking about this. I’m tired of society and biases and prejudice and all of the damned “good intentions” that really only add up to segregation. And I’m especially exhausted by all of the people who will judge me as being melodramatic. Because I truly believe school inclusion for my daughter is a civil rights issue.

Discrimination against people with disabilities is so ingrained in all of us (even myself) that we can, at times, think of them as second-class citizens. The best of us will want to help them, but will also pity them. And in the worst minds, they are thought of as burdens to society or even, less than human. Why are medical companies producing multiple prenatal screening tests to detect Down syndrome and other genetic abnormalities? They don’t make money on products that society doesn’t have a need for, and they are making plenty of money on prenatal screening.

Back to the issue at hand...I don’t want to give the impression that I am in denial of my daughter’s ability to perform in a classroom setting with typical children. I know that she won’t be raising her hand to answer every question. I know that her speech pattern will be difficult for most people to understand when they first meet her. I know that she will always need extra tutoring and might not ever catch up to the intellectual level of her classmates. But I also know that she will learn faster - and be a happier person - if she is experiencing school alongside typical kids. I know that she will have friends. I know that she will be proud of herself for the grades that she tries her hardest to earn. I know that if she is segregated into a Special Education classroom with the opportunity to visit a typical classroom at select times, that she is NOT a real member of that class. She is a visitor. She is an outsider. I know that a lot of parents of typical children take for granted the access they have to public education. I have to fight for access for my daughter. And I might not win.

So please: take back your ‘special’ labels. Reevaluate your good intentions. Think about a child being denied a full-time place in a Kindergarten classroom before they are ever given a chance.

Mini Milestones: Gymnastics

Gwyneth started Gymnastics at the end of August and it has been so fun watching her! She is taking a private lesson right now which is fulfilling the P.E. or Physical Therapy part of her home school curriculum. She is getting much stronger and braver already.

Climbing a slanted ladder:

Hanging and swinging on the rings:

Jumping on the trampoline:

New School Unit: Apple Trees

We started a new unit for September all about Apples and Apple Trees. On Monday, we all painted together. First we traced our arms and hands to make the tree trunk, then filled in the brown trunk, green leaves, and red apples. I love how different everyone's paintings turned out. From left to right: Grandma Sue's tree, Gwyneth's tree, Ryker's tree, and Megan's tree.

Through the rest of the week, Gwyn and I (and sometimes Ryker) did other Apple related projects and worksheets. We also read a few books we found at the library related to apple trees. 

I cut out red and green construction paper apples and wrote the letters of each kid's name on yellow ovals. The kids then had to put the letters in the right order to spell their names and we glued it all down.

We have a few more Apple themed things for next week, but I'm guessing that we won't have a full home school week since we are expecting Baby #3 to arrive any day!

Mini Milestones: Playground

Gwyneth had a fun playground outing last week with me and Grandma when Ryker was in preschool. She impressed us with her bravery and completed a few mini milestones.

She rode on the big kid swing and kept her balance well.

She climbed up the chain ladder mostly by herself over and over again to go down the swirl slide.

We're very proud of her!

Montessori Monday: Granola Recipe

I haven't posted for a while because we are on Baby Watch for #3 to arrive any day and we have a Grandma visiting to help out. The other Grandma will arrive next week, so we will have a very fun house and busy household! But despite all the changes right now, I'm keeping up with homeschool days for Gwyneth.

Last week on Monday, I prepped a cooking project for the kids using a granola recipe. It had lots of things to add to a bowl and mix and then bake in the oven, so it was a simple and repetitive task for them. I measured everything out for each of them ahead of time and wrote up a "Granola Recipe Book" using short sentences like "Put the oats in the bowl" and "Stir and mix in the bowl." We followed the recipe directions in this book and I took pictures of everything. Afterwards I added the pictures to the book so Gwyneth can read it as one of her sight word books. 

The kids had a lot of fun being chefs and then enjoyed the granola on top of some yogurt. It was great to have Ryker alongside Gwyn. She really feeds off of his enthusiasm for projects like this.

Montessori Monday: Sunflower Art

Even though it was Labor Day and other kids had the day off from school, we went ahead with our plan for a Montessori/project-based day at home. Inspired by the sunflowers we grew this summer, I planned a sunflower art project. Sunflowers have always been my favorite flower probably because they bloom in August, the month of my birthday. 

We read the book "Sunflower House" by Eve Bunting and talked again about the parts of the plant. I had a large faux sunflower that the kids could hold and describe since our real ones on the back deck are almost dead. The book describes the life cycle of sunflowers through the summer, so it gave us a great Science component to our day.

We used markers, glue, different sized green yarns, and brown and yellow felt to create the sunflower stems, leaves, center with seeds, petals and the dirt for the flower to grow in. Ryker also wanted to color his background blue for the sky. 

They were very proud of their pictures and we wrote numbers on the flower petals so we could practice 1 to 1 counting correspondence (a math IEP goal for Gwyneth).

Later in the day, we practiced rote counting to 20 with a sunshine worksheet. Gwyneth and I also worked through another Reading Lesson. She is starting to pick up on some of the oral instructions of the lesson which is more difficult for her to process than the visual tasks.  For the handwriting part of the Reading Lesson, I'm starting to lighten up the pressure of my hand over hers so she can start to make the motions herself. Gwyn seems to be having fun with the short 15-20 minute lessons. After she finished her school "work" she picked out a Signing Time DVD for her "choice time" break. 

Homeschooling Week # 1

I've decided to have units or themes for our home school work that will last 2 or 3 weeks each. This will help me brainstorm things to do and have a fun way to repeat and practice concepts each day.

So for the end of August and beginning of September, our main theme is SUNFLOWERS. Our colors of the unit are YELLOW and GREEN, the shape is CIRCLE, and the letter sounds (instead of just letters) are "Ssss" and "Mmmm." Other themes we'll be including are Summertime, Sun/Sunshine, and Plants/Growth. I was inspired to start with sunflowers because the kids and I planted sunflower seeds in a container pot on our deck and we have watched them grow all summer long. They are now at the end of their life cycle and withering away.

Our first week was just three days: Wednesday, Thursday and Friday. Here are the highlights of what we did:

Wednesday, August 27th
- We talked about sunflowers at the breakfast table, the different parts of the flower and the colors yellow and green.
- After we dropped Ryker at preschool, Gwyneth went to her Speech Therapy and Occupational Therapy appointments.
- Gwyneth and I went to Starbucks for lunch where we worked on some sight words, read some library books, and then practiced walking on the cement parking beams (one of her PT goals). She surprised me with knowing 5 sight words already. The library books were all picked out to go with our themes for the week, focusing especially on the "Ssss" and "Mmmm" sounds. We read:
Shine, Sun! by Carol Greene
Purple is Part of a Rainbow by Carolyn Kowalezyk
My "s" Sound Box by Jane Belk Moncure
My "m" Sound Box by Jane Belk Moncure
Big Monster, Little Monster by Mary Tillworth
Morris the Moose by B. Wiseman

Thursday, August 28th
- With Ryker at preschool, we were able to be alone to start our Reading Lessons from this book: Teach Your Child to Read in 100 Easy Lessons by Siegfried Engelmann. 

I had read online that the methods in this book could work really well for a child with Down syndrome. So we did the first 15 minute lesson which covers the sounds "Mmmm" and "Ssss."
- We worked on sight words again and read more books, then went to the library to participate in the Storytime and craft they had going on. It was mostly for toddlers, so not the best age group for Gwyneth, but she still had fun listening to the books, dancing to the kid's songs, and doing a quick craft.
- We also played with our first Lakeshore Learning "Ready To Go Learning Pack." I ordered six of these portable games that each contain cards and teach the following: Rhyming Sounds, Opposites, Beginning Sounds, Sequencing, Category Sorting, and Alphabet Matching.

Friday, August 29th
- Gwyneth had her Gymnastics private lesson in the morning for 30 minutes. She had a lot of fun especially on the trampoline.
- Ryker has an hour Gymnastics class after Gwyn, so during that time she and I worked on the next Reading Lesson which reviewed "Mmmm" and "Ssss." Each lesson ends with a handwriting task to "write the sound" so I'm using a composition notebook and small markers to do hand-over-hand writing with her. Then Gwyneth played some spelling/reading games on the iPad. We love these apps:
FirstWords Deluxe
Starfall Learn To Read
Endless Alphabet (and Endless Reader)
- When we returned home from Gymnastics, it was time to do our "Fine Motor Fun Day" for both kids. We got out big plastic bowls and some empty milk jugs and I let them experiment and play with the Cuisenaire (Counting) Rods that I had bought but they had never seen before. 

They dropped the rods into the milk jugs one by one, then poured and shook them out. We spun and mixed the rods in the bowls then sorted by colors. And we "built" some 2D shapes on the table and then some rainbows, flowers, etc. Ryker built some magic wands for all of us also. With the geometric shapes, I tried to have Gwyn copy the shape that I made with her own rods, but I had to guide her a lot in this. But we kept the activity fun and they played for over an hour with the counting rods.

- Later in the day, Gwyn spent more time on the iPad with the Reading Rainbow app which we subscribe to for $10/month. Both kids love this app because they each get to pick out 5 books at a time to download into their virtual backpacks. They get to turn the pages while the app reads the book to them, and there is an interactive component on many of the pages. They can exchange the books for new ones an unlimited amount of times.

Our first week of homeschooling was very quick and simple. I'm feeling really good about the choice we've made!

School Changes

For many months now I have dwelled on what school option would be best for Gwyneth: public, private, or home school.  At the end of Kindergarten in the public school last year, something seemed to be changing in her emotionally. She was having a lot of frustrated outbursts and didn't seem to be enjoying school anymore. She was acting out at times in school and also at home. I started to question if it was the right environment for her. Her learning seemed to stop and she made no progress on her academic goals through the spring.

Her school day was fairly chaotic with moving back and forth during the day from the Special Education homeroom to the General Ed Kindergarten, and being pulled out of class for various therapies. I think it was overwhelming for her to have such a random day. Also, I think she was noticing that she was somehow different from the "typical" Kindergarten kids. She was just a visitor to their class and not an equal member or someone that they could become friends with. She didn't eat lunch with them or go to recess with them. She was with them a couple times a week for Art or Music or PE as long as the schedule didn't conflict for her separate therapy sessions (Speech or OT or PT).

We knew she would need to repeat her Kindergarten year. I looked into a few private schools for her, but only one of the three would accept her as a student. The others explained that they would not have the resources available to accommodate her needs. Specifically, her needs include extra help with potty time and clothing, learning to write, draw, and cut, and extra time or modifications on school work. The very small private school that was willing to take her did not end up with enough Kindergarten age students signing up to form a younger class (and even if they had it would have been a struggle financially for us to afford that school.)

Over the summer I did a lot of research about her learning style and how Down syndrome would affect her accomplishments in Kindergarten subjects. I tried out some homeschooling and "unschooling" days and it seemed to go really well. She also seemed to come back to her generally happy self during the two summer months away from public school.

In July, we met with administrators, teachers, and therapists at the public school to talk about changing the school day for Gwyneth to include her more in Gen Ed. We were met with some resistance, but many of our requests were put into Gwyn's new IEP (Individual Education Plan). So on August 4, she started the new Kindergarten year. I went to the school to shadow her on two different days and observed some positive and some negative things. We had pushed for her to be included in the morning routine, recess, and lunch time with the regular Kindergarten class, and those were all positive changes for her. But she was still missing time in Kindergarten to be shuffled to other therapies or to the Special Ed room. I know that the school was really trying to do the best for Gwyn, but overall I still felt like she wasn't getting the right kind of instruction or schedule to benefit her learning. Also, some of her behavior problems from last spring were popping up again even in the first week of school. She was getting less sleep, acting more defiant and irritable, and wasn't communicating as well.

We made our final decision and withdrew Gwyneth from the school and began our "home study program" last week. The plan is that we will meet with the public school again in March to discuss the 2015-2016 school year and see what we can all agree on. In the meantime, I will work with her on her Kindergarten IEP goals and our schedule will be more flexible, allowing us to do outside therapies and activities. Ryker is in preschool 3 days a week so I have some time to focus on her academic goals on those days.

Here is our general home school weekly plan with activities:

Monday - Montessori/project-based learning

Tuesday - Reading/writing/math etc.

   - Story time at the library

   - Horseback riding lesson

Wednesday - Speech therapy

   - Occupational therapy

Thursday - Reading/writing/math etc.

Friday - Gymnastics class

   - Fine motor fun day

There are also two different nature-based science classes for young kids that we will try to sign up for that will take place in Oct/Nov/Dec. One is through the parks & rec department and the other is at a home school enrichment center. I'll try to keep up with my blog posts to document the fun we have and progress we make with home schooling!

Siblings Sharing a Room

So in the couple weeks since I have posted anything, I've been busy with the start of the public school year for Gwyneth. She is repeating her Kindergarten year, and I will have MUCH to say about that in future posts.

But for this post, I wanted to start sharing some of the things we did over the summer. One big change we made in the house was to buy Ryker a twin mattress (moving him out of the tiny toddler bed) and move Gwyneth's twin mattress into his room. We decided to try this room-sharing so that we could use Gwyneth's room as a nursery after Baby #3 is ready to move out of our room eventually.

I also wanted to make the new shared sibling room a little more "big kid" style instead of baby or toddler style. So we got rid of all the baby and toddler toys and decorations on the shelf. I moved the rocking chair out and planned to put together a Reading Nook in the corner. One of the craft projects that the kids and I did this summer was an alphabet caterpillar. After we found a caterpillar in one our container plants outside, we talked a lot about caterpillars and butterflies. Unfortunately, when I looked up our brown and black caterpillar friend on the internet, it turned out that he was destined to become a boring brown moth, not a colorful butterfly. Oh well. It did give me the project idea for a construction paper alphabet caterpillar to tape to the wall for the Reading Nook.

Today I kept Gwyneth home from school because she has a runny nose and noisy cough. Luckily she was in good spirits and still had an appetite, so today was kind of a play day/unschooling day. We finally set up the Reading corner and the kids had a blast with their reading/play tent. There is a small corner shelf for books behind the tent that they can reach through the tent's back door.

Of course, after this first, sweet picture was taken, a major fight occurred inside the tent and I had to put in place a "one-kid-in-the-tent-at-a-time" rule... 

I am still finishing up the curtains for the big window in their room. Ryker's theme of robots in blue and gray and red is still present in room, so the curtains will match that theme, but I'm adding bits of Gwyneth's things around to help them both feel that it is truly a shared sibling room.

Mini Milestones: Asking Why?

Gwyneth picks up a lot of new words or phrases from the people around her by mimicking the words and the way that person's voice sounds. One of her biggest models is younger brother Ryker and this has been both good and bad for the things he has taught her in the last year.

Here's a good one: this summer Gwyneth has started asking the question "Why?" in response to me when I tell her something (usually something that she has to do or stop doing). She says it in his same tone of voice: a little bit annoyed and defiant sounding. But despite that, I see this as a nice milestone accomplishment that she is engaging a little further in conversations!

Homeschooling Journal Friday 7-18-14

Fri 7-18-14

We continued with talking about words with the "ch" sound. 

In the morning Gwyneth and I talked about how we "change" clothes and "choose" an outfit. I used a sing-songy voice to keep her attention on repeating the words and the "ch" sound. She is a visual learner, so when there is no visual to keep her attention, singing really helps.

We read a book that mentioned making binoculars (which was a craft project we did last week) and watching birds. So we said that we "watch" birds and emphasized the "ch" sound at the end of the word.

For our physical activity the kids joined me to "watch" a yoga DVD. It is prenatal yoga so it is modified to be very easy. Gwyneth followed many of the movements during the first 20 minutes of the 45 minute video and participated sporadically for the remainder. I was impressed that she stayed in the room with me the whole time. We talked about how in yoga, we "stretch" our arms and legs and emphasized the "ch" sound.

Then the kids were allowed to "watch" Sesame Street on the "couch" but before it started, we wrote our new "ch" vocabulary on the library/TV room white board, reviewed the activities we had done that morning and Gwyn helped spell out each word and pointed to the letters as she said them: change, choose, watch, stretch, couch.

At lunchtime, we used the kitchen white board again to spell out new "ch" words: we go to the "kitchen" for "lunch." Lunch was a turkey, cheese and lettuce tortilla wrap (we wrote the word "crunch" to describe how the lettuce sounded), an applesauce "pouch" and a special dessert of "chocolate chips." I was happy that it didn't seem too difficult for Gwyneth to hear the "ch" sound in the middle or at the end of words. We also discussed how "lunch" rhymes with "crunch" and "pouch" rhymes with "couch," but I'm not sure how well this sank in for Gwyneth. Little brother Ryker is very interested in rhyming words right now so he enjoyed talking about the rhymes more than listening to Gwyn spelling out the words. Gwyneth has known all of her alphabet letters for a long time, so spelling out words is easy for her, but Ryker is just starting to recognize the letters. I think it helps them both to hear the other talk about the letters and the concept of letter/word sounds and rhyming.

Summer Homeschooling

This summer, I have started adding in some "school" activities into our daily lives to continue Gwyneth's kindergarten education. The kids and I have created a reading nook with an alphabet caterpillar (more on that later) and we have visited the library many times to exchange our books. We've done some other small craft projects, but I've been too busy to take pictures and blog about each one!

I'm trying to use more of an "unschooling" philosophy and just follow Gwyn's lead by watching for what she shows interest in and then creating teachable moments. I've decided to keep a "homeschooling journal" to keep track of what we work on and monitor any progress Gwyn makes. I've already noticed that Gwyneth responds much better to the unschooling method than when I used to try to get into "teacher mom" or "therapy mom" mode. Her cooperation and engagement are improving.

Here's my first journal entry from Wednesday:

Wed 7-16-14

During the morning routine, Gwyneth was very uncooperative. She declared "NO" many times when I tried to get her ready for the day. I had to get silly with answering "Yes" and giving tickles to keep the interaction from escalating. She was more cooperative with this response and eventually answered "Yes" spontaneously and began to help. I thought it would be good to put in place some accommodations for Gwyneth to be taught self-help skills at home. A visual schedule on the bedroom wall that shows the morning and night time routines: Wake Up, Go Potty, Get Dressed, Do Hair, Eat Breakfast; and for night: Brush Teeth, Go Potty, Get PJs On, Read Story, Sleep in Bed.

We went to McKenna Farms for Speech Therapy: 30 min with Nicole

and Occupational Therapy: 1 hour with Kacie and Carmel

Nicole worked on reminding Gwyneth to use "smooth" speech instead of "bumpy" and I will use these terms at home when she does a stuttering or repetitive speech pattern.

At lunchtime, Gwyneth asked to eat "cheese" so I took the opportunity to work on "ch" words during the meal. While she ate, I wrote on our kitchen white board the lunch-related words "cheese," "chair," and "chips" and talked about the "ch" sound as well as asking her to spell each word. Gwyn only had trouble skipping the "i" in "chair" the first time. She spelled the other words well and said "that spells ____" after each one. She was very engaged and attentive to the idea of the "ch" sound.

In the afternoon, we watched some short phonics singing videos from YouTube:

A-Z letter sounds ("A is for Apple, aa, aa, apple" etc)

A-Z phonics songs with hand actions

Vowel phonics songs with hand actions

Letter blend sounds with songs and hand actions

In the blends video, the song for "ch" was about a train that was "chugging" and saying "choo-choo." This gave me the idea to plan a train project to practice the "ch" sound.

Mini Milestones: Walking Down Stairs

For Gwyneth, the larger milestones are spaced father apart than for typical kids, so we tend to notice and celebrate a lot of the mini milestones that happen in between. One of her latest accomplishments is walking down the staircase without any help.

Long awaited update

Well, hello again!

I've decided to reopen my blog to chronicle our life with Gwyneth once again. Life has certainly not stopped or slowed down since the last time I posted almost two years ago! Gwyneth just completed her first year of Kindergarten at the public school, but will be repeating that grade for the 2014-2015 school year. The experience of moving up from pre-K had some ups and some downs for her. I am now expecting each year to bring its own challenges.

For our family, the latest news is that little brother Ryker is not so little anymore (at age 3, he is starting to pass up 6 year old Gwyneth in weight and height) AND we will be adding one more child to the mix this fall! We are expecting a little girl at the end of September and both kids are very excited for their new baby sister.

Summer is moving quickly for us already. We spent a nice two week vacation visiting family and friends in Colorado and returned this week to our home in Georgia. As we get back into our routine, I'll be blogging about our busy therapy schedule, some summer homeschooling activities, and our activities with the Down syndrome community locally and online.

Cheers!

31 for 21 Sibling Sunday: COPYCAT

Ryker likes to copy most of what Gwyn does especially with speech and sounds.  This can be very cute, and it can be not so good.  Like when Gwyn is screaming or grunting because of an auditory or other aversion in the environment.  Ryker doesn't understand her reaction and usually thinks she's trying to be funny, so he wants to do it too.  Besides those times, he is very cute when he tries to copy some of her phrases and says them in her unique voice.

I can't remember when Gwyneth and I started the "Where are you?" game, but it must have been when Ryker was just a newborn.  I've almost forgotten that this phrase was started by her, because now Ryker is the one who says it all the time in the exact way that Gwyn says it.  They yell out "WHERRRARRRUUUU?" in one long sing-songy word after someone or some object's name.

"Mahhhhh Meeeeeeee, WherrrrARRRUUU?"
"Doggy, WherrrARRRUUUU?"
"Football, WherrrARRRUUU?"

Ryker and I use this game all the time -- it's a great way to redirect him if he's starting to whine for something he can't have.  I ask him where something is that he CAN have and he searches for it while calling out "WherrARRUU" and he is excited when he finds it.  Ryker uses Gwyn's exact voice for this phrase.  I wonder how long it will be before he breaks the words up into individual clearly pronounced words.
"Where  Are  You?"

He has other funny phrases of his own with the "Where are you" game that he says all the time:
"Where Dit Go?"
"Where De Other One?" (he really likes things in pairs)
And of course "There it is!" which is always preceded by a big exaggerated expression of jaw-dropping surprise.

I have found myself now using some of Ryker's language when I talk with Gwyn.  He's in a very talkative phase so he's teaching me a lot about keeping up a conversation with a toddler.  Gwyn is still farther along in speech development than Ryker, but she internalizes a lot of what she is hearing and learning so I don't get much instant feedback.  On the other hand with Ryker, I get constant feedback about how his language is evolving every day.  He repeats everything and he practices, practices, practices talking.  Gwyn will repeat individual words if she's in the mood for it, but sometimes I can't tell if she's even paying attention.  But then, later on, she might say a word or phrase in the right context and I'll realize that she was listening after all.

31 for 21 What If Wednesday: RESPECT

What if everyone was taught to treat people with intellectual disabilities as THINKING people who deserve RESPECT?

We wouldn't live in a world where calling someone the R-word is the go-to insult for anyone we don't like, or anyone we think is doing something stupid.

We wouldn't have to deal with constantly asking people to stop using R-word insults.

Most people still use the R-word casually because they are ignorant of its deeply felt offensiveness.  And when people in the public eye are asked to apologize, most do.  Unfortunately some people stand by their use of the R-word and don't feel bad at all.  I think some people feel okay using the R-word as an insult because they don't consider those with intellectual disabilities worthy of respect.

Ann Coulter is the current offender, repeatedly using the R-word on Twitter for shock value.

A self-advocate (a 30-year-old man with Down syndrome) responds to the controversy with a well-said open letter:

http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

31 for 21 Therapy Tuesday: DANCING ON HORSEBACK

Gwyneth was sad leaving school Tuesday afternoon when I picked her up and I'm still not sure what was wrong.  Her assistant teacher said she had trouble paying attention and it had been a long day.  It is so hard to see her upset and not to get any explanation from her about what is wrong.

Anyway, she was crying in the car before she fell asleep on the way to therapy.  Then when I handed her to the OT, she started crying again.  Fortunately, she cheered up as soon as she was put on the horse, and her OT said she was dancing and having a great time while riding.  I'm glad she shook off her sad mood.

31 for 21 Catch-up

Well, I slacked off all weekend on getting my blog posts done, so now I have to do some catch-up.

FAQ Friday: RESPITE CARE
What is Respite Care?
Respite Care is child care provided for little or no cost to parents of kids with special needs.  On Friday, we took the kids to a Respite Night in Kennesaw, GA at a play place called BounceU.  It was hosted by Corrigan Care who provides lots of volunteers to give individual attention to kids with special needs and their siblings.  They hold these Respite Nights once a month in Kennesaw.  So Reid and I went to a movie and a quick dinner on Friday night.  It's really nice to have a long break and the kids have a ton of fun too.  They get to stay up really late playing with other kids and new toys.

Speech Saturday: MCKENNA FARMS FALL FESTIVAL
We took Gwyneth to speech therapy Saturday morning at McKenna Farms where they were setting up for their Fall Festival fundraiser.  We went out to breakfast, then back to the Farm for the festival.  The main attraction was definitely the pony rides and we wanted to let both kids ride.  Gwyn of course was happy to have a ride on the horse since she has been doing hippotherapy.  Ryker loved watching the horses and even liked wearing a helmet, but as soon as he was lifted up onto the horse's back he started crying and said "no!"  So he wasn't ready to ride yet this year -- maybe next year.  But we had fun watching Gwyn ride, watching the mini horses run and jump in an obstacle course, listening to the live music and people-watching.

Sibling Sunday: BEST FRIENDS
There was a super sweet sibling moment on Friday at the Respite Night.  When we arrived to pick the kids up, they were in a small room watching a movie with other kids and the caregivers.  When we opened the door, I got to see Gwyn and Ryker interacting before they saw me.  They were rolling our unopened sleeping bag back and forth to each other and giggling (Ryker was standing and Gwyn was sitting).  They were having so much fun being silly together.  It made my heart melt to see that they are best friends.

Another sweet thing about Ryker that night was that one of the caregivers told me he had made a new friend.  There was a little boy who had Down syndrome who was probably around the same age as Ryker.  But this little boy was sitting while Ryker was walking around.  The caregiver said that Ryker was drawn to the little boy all night and was patting him on the head gently and saying "Baby" and both boys would laugh.  I got to see him do it again while she was telling me the story and it was so cute.  I like to think that in Ryker's entire life he will be very tolerant of people with differences and open to friendships with people who have disabilities.

Milestone Monday: GOOD!
This is probably not much of a milestone advancement, but for the first time today, Gwyn gave more than a one word answer to my question "Did you have a good day at school today?"  I ask her everyday when she gets home from school and she happily says "Yeah" every time except once last year (when she did get in a tiny bit of trouble for not paying attention one day and her answer was "No").  But today her answer was "Yeah, GOOD!"  To me this was big because it showed a definite understanding of the question and her own answer.  She has been giving a little more to us speech-wise in recent months.  She's been saying "Okay" a lot as a response instead of only repeating the last word that was spoken.  She still does the repeating thing (and Ryker is in this stage now too) but I feel like both kids are comprehending my words more and more each day based on some of their reactions.

31 for 21 This Moment Thursday: PRETEND PLAY

One of Gwyneth's favorite activities at home is to make up pretend conversations with her toys or other objects she finds around the house.  She used to always do this with just her hands, moving them up and down like they were talking to each other.  Now she does it with stuffed animals or markers or other small objects.  She might have a future in puppeteering - maybe even a job on Sesame Street.  :)

The stuffed toy dogs have been her top choice lately and she was playing her pretend scene with one doggy on Monday afternoon when I suggested we have a snack at the table together.  She sat in her booster seat pushed up to the table with the dog in hand while I brought my food and brought her a snack cup full of crackers.  As we ate, she started getting very animated, saying "mmm," "good," and "yummy" to her dog.  Then she decided to pretend that the toy dog was also eating the crackers.  She buried his nose into the snack cup and pretended he was eating.  I started saying, "oh, is the doggy eating crackers?" and she responded with a smile and more doggy eating noises.  She moved the dog's face from the cracker cup and I said then, "Doggy, are those crackers yummy?"  Gwyn moved his head and said "Woof."  I laughed out loud at her serious commitment to the puppeteering.  And she started laughing with me.

It was a very cute scene that I want to remember always.