I have a love/hate relationship with the word special.
- kids with special needs
- special-needs family
- Special Education
- Special Education teacher/classroom
- special ed bus
- Special Olympics
- special, special, special ... most of the time I want to say, but we're just an ordinary family! There is nothing special about us!
Kayla has a harder time with academics. She doesn't pick up on concepts as quickly or easily as most typical kids do. But when a typical child is falling behind in a subject what do they get? Extra help. They get extra help in reading, or math. So why does Kayla get special education? Why isn't what she getting just the same - extra help? She has needs, but why are they special needs? They are just needs. Extra needs sometimes. Additional needs/help.
She's not special or extraordinary because she has an extra (not special) chromosome. She's just a kid with +1 more chromosome. Does that make her special-special? Naw. It's just who she is.
And I don't fully buy into the concept that God only gives special children to special people/parents. Not at all.
God did not give Kayla to me because I was special. Because I wasn't. And I'm not. Seriously. I'm no more special a person than you or you or you. There was nothing I did in my pre-motherhood life that set me apart from anyone else. I'm average. Typical. I did nothing that would have showed God I was 'meant' to be a parent of a kid with special needs. I did nothing to show I was any more ready, deserving, capable, or equipped of having a child with Down syndrome than anyone else.
If God only gives these special kids to special parents, then what about the 90% of women who terminate their pregnancies upon finding out their baby has Down syndrome? If they were given this special child because they are a special person then why did they not carry their baby to term? Why in Eastern Europe are babies with Down syndrome who are born to those special parents immediately left at the hospital or orphanages? Aren't they special parents because they were given a special child?
I'm not special. I wasn't before I had Kayla and I most certainly am not after I gave birth to Kayla. On any (most) given day my parenting skills are certainly lacking in being a special parent.
I'm just a mom. A mom raising two kids.
For the most part we're a pretty typical family - mom, dad, daughter, son. That's it. Not a special family.
It's not even that it's a negative word. Just look at a few of the descriptions from Dictionary.com
I'm not advocating against using the term special needs. It's clearly not anything like using the R-word. I know it's an easy umbrella term to cover all people with disabilities or who have some kind of differing-need.
I'm just saying ... that I have this love/hate relationship with that word special. That's all.
We've had some beautiful weather here lately so we've been able to get out and about on the weekends. This past weekend we went to Cypress Gardens. Since it is technically 'winter' (I use that term lightly when talking about winter in SC) there wasn't much that was green or in bloom. I can imagine how beautiful it must look in the spring. It was still a beautiful day to explore and take a self-guided swamp boat adventure. Although I was pretty leery to do this considering the alligators!
At only 3 (ok very close to being 4) years old Lucas seems to be quite the schemer already.
When he's watching TV he pretty much owns the loveseat. The whole thing. It's all his because he lies down on it with a throw pillow and blanket. He has claimed is spot ... all snuggled in and comfy. Most of the time he likes watching TV with his little whale.
The other day he had assumed the position on the loveseat and realized he didn't have his whale. He asked Kayla if she would go upstairs and get his whale for him. She said no. He asked again. She said no again. He pleaded in that sing-song way kids have of saying "pleeeeassseeee." She relented. As she often does because she's just an awesome big sister that way.
As she ran up the stairs Lucas said to me, "See mom? I was team-working!"
I told him that wasn't teamwork, it was him being lazy and not wanting to go upstairs so he asked Kayla to do it for him. He said, "Yeah, that's teamwork!"
Then today they were "organizing" (ie cleaning up) the playroom. I heard him say to Kayla, "Can you clean up cause my neck hurts?"
She said, "Ok." He responded, "Ok I need to get a drink of water."
Little stinker. He did come downstairs to get a drink of water and then went right back upstairs to help her finish up.
The following video A Vision For Abby is from the Possibilities video series. The videos "focus on the lives and accomplishments of individuals with developmental and intellectual disabilities. ...Each video shows the myriad possibilities and options that all people have as they grow up, become independent, and pursue their life's dreams and goals." There are 4 videos, including one with a young girl with Down syndrome just starting out in school.
Meet Abby, a 21-yr old adult with Down syndrome and is an assistant in a preschool classroom. She was never placed in a special-education curriculum, and graduated in 2009.
(Words in bold are my own highlights) "The largest study of educational outcomes of 11,000 students with disabilities, the National Longitudinal Transition Study, showed that when students with disabilities spent more time in a general education classroom they were more likely to score higher on standardized tests of reading and math; have fewer absences from school; experience fewer referrals for disruptive behavior; and achieve more positive post-school outcomes such as a paying job, not living in segregated housing, and with having a broad and supportive social network. These results were true regardless of students’ disability, severity of disability, gender or socioeconomic status.
Furthermore, as the recent WNYC story states, the achievement of students without disabilities is not compromised by the presence of students with disabilities in their classrooms. Some studies even show that implementing inclusion on a school wide basis improves achievement for all students.
And just as important as academic outcomes are the attitudes and values that all students learn when they are educated together."
Last week NBC Nightly news aired a story on Ryan, a 6 yr old with Down syndrome who was recently in an ad for Target. (story and video clip at that link).
According to a Target rep they have been including people with disabilities in their ads since the early 1990s. I shared a picture (on Twitter) of an ad they had last summer that included an adorable little girl with Down syndrome. Ryan has been modeling since he was 3. He has also been in Nordstrom catalogs (and Nordstrom has been using child models with Down syndrome since 1997).
In the above article it is mentioned that Ryan goes to school (and as the video clip puts it, "a school for Down syndrome children...") at The Arc of Essex County Stepping Stones School.
In this extended edition of the news piece (this part I don't believe was aired on TV) his parents discuss a little bit about sending him to this particular school.
The description on their website is that the school "provides education supports to children ages three to ten who have Down syndrome or other cognitive impairments." It says children with other cognitive impairments, but from the glimpses on the video it looks like all the kids in his classroom have Down syndrome.
Reading about this school I have to admit that for a few minutes I thought ... 'Huh. Interesting. What if a school like this was available for us to send Kayla to. Would we?"
Initially I thought there sure are some positive aspects to sending my child to a school like this.
- I imagine IEP meetings would be a piece of cake. I mean, there would be no discussion about how much time out of the school day your child would be 'included' in the general education classroom vs the special ed classroom.
- My child would be surrounded with other children just like her. She would walk through the halls and not be the only one, or handful, of students with Down syndrome.
- Everything would be tailored and designed to educating a child with Down syndrome.
Ryan's parents made this school decision with what they believe is the best choice for Ryan. And it looks like he's happy there and thriving and that's wonderful.
But yet, even though in some ways it seems ideal, that's not where I would ultimately want to send my child. I'm not judging Ryan's parents for making a different choice either - it's their choice and it's working for them. And this is only my opinion of why I wouldn't send Kayla to a school that was just for kids with Down syndrome.
- Where is the diversity? Where are the peer models?
- Aside from speech therapy, (and the adults in the school) where would she hear and receive and pick up on appropriate speech patterns and language from her peers?
- She wouldn't have the experience of a typical classmate teaching her things like swinging. (Ok I'm well aware that being in a school with all students who have Ds that she could very well have picked this up from another student w/Ds .. this was just one example of her experience at a typical school.)
- The Stepping Stones school only goes up to age 10. So then what happens after that? All of a sudden you're in a regular public school; would it be an easy transition?
- I want Kayla and Lucas to go to the same school (and I'm still frustrated that she's not at her neighborhood school as it is.)
- Meanwhile typical students and teachers at the public schools are missing out on an opportunity to know and educate a child with Down syndrome. How will perceptions change?
- Research shows that inclusive classrooms have just as much benefit for the typical students as it does for those with disabilities.
- This is actually the complete opposite of what I want for Kayla. I want inclusion, not segregation. While I'm sure it would be nice for her to be surrounded by all peers with Down syndrome that simply is not the way society works. My vision is for Kayla to be fully included through her schools years, and admittedly we're not there yet. It's just ideally that is what I would like for Kayla. But I realize not every school is fully on board with full inclusion. For full inclusion to work the attitude has to be there from administration to teachers to have it implemented in a way to benefit all students.
From Down Syndrome Education: Training for inclusion needs to be a priority in the training of all teachers. Training teachers in inclusion leads to better teachers, who are more skilled at meeting the diversity of learning needs that will be found in any group of typically developing children, as well as being able to include children with disabilities in their classes, schools and communities.
Last weekend I attended a workshop on preparing for inclusion in life. This covered elementary school through college and beyond. The presenter said a number of things that made an impact on me. One of which was about changing the world.
She said, "The world isn't ready for inclusion because society doesn't have experience with people with disabilities. We have the power to change that. The more familiar people get with people with disabilities in society the more accepting society will be. It is not enough to enable students with disabilities to reach their full potential. We must re-educate future employers, neighbors, friends, and parents."
Students who grow up having other students with disabilities in their classrooms are more likely to hire those with disabilities.
We have to start changing the mindset of future teachers, employers, doctors ... society in general ... that there is a place for those with Down syndrome/disabilities and that place is belonging right in with the rest of society. They don't need to 'earn' their place in society. People with disabilities should be included in all aspects because disability is natural.
I think this sums up inclusive education nicely: If we wish to make a difference to the life experience of children and adults with disabilities, all children need to grow and learn together, so that the neighbours, friends and workmates of adults with disabilities have the opportunity to value the person first, to realise that everyone has strengths and weaknesses and that everyone has a contribution to make to a caring society. Anyone can become disabled through illness or accident and everyone will become less able with age. Developing caring, inclusive, communities improves the quality of life of all members of the community. From DSE's Education for Children With Down Syndrome: An Overview
The voucher is good until Apr 29th and can be used immediately at Katz Gluten Free. They have bread, pies, cookies, cakes etc. I think I need to stock up on pizza crust for Kayla; it seems there is always pizza at some event or another that she needs to bring her own GF pizza!
I don't recall that we've tried any of the Katz products yet, so I was excited to see they offer a sample pack of items that you can get for free by using code SAMPLE and just pay shipping!
One of the better brands I've found on this gluten-free journey is Pamela's Products. The first thing we tried was the Baking and Pancake Mix. This made for some yummy gluten-free pancakes (and there are plenty of other recipes on the site for this mix as well.)
Another of their yummy doesn't-taste-like-gluten-free products is the Chocolate Brownie Mix. What's even better is this can be ordered in a single-serving pack. It's microwaveable and done in about a minute. This is great for a quick and easy brownie mix for on the go. All you need is a little bit of oil and water and a microwaveable bowl or cup. I love these! I took a single-serving pouch when we went to Chicago. During the awards banquet dinner I handed our server this little bag of brownie mix and asked if he could ask the chef, or whoever in the kitchen, to make this up for Kayla (it only takes about 60 seconds) so she could have her dessert with the rest of us (which wasn't gluten-free.) It worked out wonderfully!
I ordered a box from Amazon which is a few dollars cheaper when signing up for the Subscribe & Save (which can always be cancelled at any time).
These little pouches come in handy when Kayla is invited to a birthday party. I can just make up a mix before we leave the house to take with us ... so much easier than having to make up a whole cake, or tin of muffins, for one birthday party. Then what am I supposed to do with the rest of the cake/muffins? I usually freeze them, but that only lasts so long; they just don't taste as good once they've been frozen.
The pouches say they are single-serve, but they actually make up a pretty good size brownie. I cut it in half for Kayla and get two servings out of it.
I just found out the Baking & Pancake Mix also comes in the single serve pouch as well. Looks like I need to stock up on those too! Definitely makes traveling easier!
A couple months ago I posted a photo of Kayla from the photo shoot that was done in Chicago. I also used one of the family pictures for our Christmas cards. I just realized I never shared some of the other pictures from this photo shoot.
I have such a hard time taking a decent picture of Kayla lately; seriously! I have to snap what seems like 50 pictures just to get one or two that look nice. She has some aversion to looking at me/the camera and will keep her eyes down or to the side. Anywhere but where I want them to be! So I wasn't sure how this photo shoot was going to turn out.
The other thing I was worried about was Kayla's right eye. A few days before the trip Kayla had a cold, by the time we arrived in Chicago I think she had a sinus infection. It was bad. Her eye was constantly watering, she was rubbing it and there was a streak of redness from her eye down to her cheek. By Thur night her eye was a bit swollen. Lovely, just what we needed for a photo shoot for "Most Beautiful Eyes!" By late Friday afternoon it was starting to get a little better, but in some of these photos I can still tell her right eye was a little puffy; I'm just glad the photo shoot wasn't Thur night!
To say I was pleased is an understatement! The ladies were just awesome with the kids and I love how these photos came out! One lady (referring to herself as the child wrangler) did such a great job of keeping Kayla sitting still, focused, relaxed, and happy - which made for some natural smiling/laughing photos.
If we lived closer to NYC I would consider using these photos to put together a portfolio (hello, ToysRUs!)
We went to a children's museum earlier that day and forgot about the stamp on the front of her hand!
I think Lucas was looking quite dashing himself - little Mr GQ!
I'm a former Air Force brat, married to another former Air Force brat (we met in high school in Germany!). We're raising our kids in the 'military-brat' lifestyle (hubby is in the Air Force). Kayla has Trisomy 21 (Down syndrome) & Celiac disease, and Lucas thinks he should get everything he wants and is fiercely independent! I'm also a Discovery Toys consultant.
All material on this blog, written and photographic, (unless otherwise noted) is done by me. Copyrighted. Ask permission if you would like to use something.
