World Down Syndrome Day: Random Act of Kindness and Rock Your Socks!

Tomorrow is World Down Syndrome Day, which is on 3/21 for 3 copies of the 21st chromosome.  A couple ways to help increase awareness and show support is to perform a random act of kindness or wear crazy socks to draw attention in order to strike up a conversation.  In either case, you can tell people that what you are doing is in honor of WDSD and you are showing support to people with Down Syndrome.  If you want to show a picture of our little guy, please feel free!  It’s always nice to connect the act with a sweet face.

So what kind of random acts can you do?  Something that will allow you a chance to talk to someone directly is ideal, so waving in a driver in bad traffic probably wouldn’t be a good one.  But letting someone cut in front of you in line, buying a stranger’s cup of coffee, buying the person’s lunch behind you, bringing in cookies into work or dropping it off at school with a little sign, whatever inspires you throughout the day works too!  I’ve also heard of people paying for parking meters or some other thing and leaving a note on the windshield.  The key is to increase awareness and show support while doing the act of kindness, otherwise it just shows people that you are a good soul (a good practice in general but does not necessarily increase awareness).  It’s kind of a Pay It Forward with a Down Syndrome twist.

Or you can wear outrageous socks (because they look like chromosomes with some imagination) to increase awareness too.  So when someone looks at your odd display, you can strike up a conversation about how you are supporting WDSD and even perhaps share a quick story or two (or picture of your loved one with Down Syndrome). Some people like this, some don’t.  And living in the Midwest, the cold weather can prevent people from noticing socks hidden in long pants and shoes or boots.  So I prefer the random act of kindness myself (and it makes you and another stranger feel good and have a better day, which is always a good thing).

Increasing awareness is something I try to do every day in everyday life.  When I check out somewhere, I try to bring up the topic of our son and then I show them a picture of him on my phone.  Sometimes they aren’t very interested, but I would say more often than not, we have a pleasant conversation.  Or if I’m out with my son, I will bring up the fact that he has Down Syndrome and how great he is doing.  Even people in line will strike up a conversation sometimes, although I tend to bring down the cashier’s productivity momentarily.  But no matter.  If I can help increase awareness, people in a rush can find another line to wait in.

This year’s theme is “my friends, my community.”  Click here to view more.  This theme is all about showing support for inclusion for people with Down Syndrome in the community, which leads to increased abilities, heightened self-confidence and greater independence overall.  We strongly support inclusion for people with Down Syndrome, and we strongly believe that inclusion is critical for global acceptance and for allowing people with Down Syndrome the opportunity to make their dreams come true.  That is why we are sponsoring a charity walk for Lumind, a non-profit that is working on research and clinical trials to help improve cognition and behavioral deficits, as well as Alzheimers, in people with Down Syndrome to bring us one more step closer to realizing true inclusion in the community.  Click here to learn more.

So tomorrow is a specific call for the world to show support to those with Down Syndrome (hence why it’s called WDSD), so no matter where you are in the world, please join us in showing support.  And don’t forget to share your pictures and stories on social media!  #WDSD2016

31 for 21: why is October Down syndrome awareness month?

So this question entered my mind as I was talking about how busy the month of October is to my husband, whose birthday is in October as well as another couple family members. But October seems to be dominated by breast cancer, and while I love that we have a month commited to celebrate Down syndrome, I always wondered why. It seems like March was more fitting, with world Down syndrome day being 3/21 for 3 copies of the 21st chromosome, as well as the start of spring, one of my favorite seasons, especially after a harsh Chicago winter. 

So I googled it and came across this article (click to view), and was surprised to see that president Reagan proclaimed it to be back in 1984. What was even more surprising (and distressing) was his message, “This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps…Research has uncovered the genetic basis for the condition and points the way to its ultimate prevention.”  Points the way to its ultimate prevention?  You see, maybe I am naive and ignorant, but it still shocks me to find out that so many choose to abort their unborn babies who have been diagnosed with Down syndrome. 

For those who have read our story, you know where we are coming from and why we personally wouldn’t consider aborting our baby for being diagnosed with Down syndrome. I am also pretty sure I couldn’t abort my baby for any medical reason, no matter what the doctors say. Not necessarily for religious reasons, but I could never forgive myself for taking such a decision into my own hands. Because what if the doctors are wrong?  Just too many “what if’s” that I just wouldn’t be strong enough to go through with it unless it happened naturally. 

So if we had Luke decades ago, I probably would have faced some strong controversy with this view.  I wonder if society would change its viewpoint on people with disabilities if we grew up in a society where they were treated as equals instead of being treated differently and tucked away in institutions.  Would we become a society that didn’t have such a high percent of pregnancies with a Down syndrome diagnosis being aborted?  I have read that other countries who have more positive perceptions of people with disabilities also have lower rates of abortion for pregnancies with Down syndrome diagnoses. 

Can that happen here in the United States?  I certainly hope so. And like the writer whom I reference above, I too believe we have yet to see the true potential of people who happen to have Down syndrome. And I’m hoping with more awareness and acceptance, I’m hoping that one day we will see a greatly reduced percent of abortions of pregnancies with a Down syndrome diagnosis. Not because of any kind of legislation (besides sharing accurate and up to date information and contact info for support groups at prenatal diagnoses, which I think should be a given), but because people truly want their babies with Down syndrome because it won’t be seen as such a negative diagnosis anymore. 

31 for 21: The difficulty of finding a good school for a “special needs” child

I met a mom this week who has a child with a severe vision impairment. I wasn’t sure if I should say “I’m sorry” as I don’t like it when people say that to me when I tell people that Luke has Down syndrome, but was I supposed to in this case?  I decided not to and we just talked about how different experiences can be in a school district when you have a child with “special needs” (yes, I haven’t come up with a better “label” but if you have one, please share!). 

The term “disability” can cover so many ranges of abilities and skills that one cannot just say a school district is great with special needs because individual circumstances vary so much.  When we started looking for a bigger house, I researched local school districts because it was important to me that we (and Luke) would feel welcome and that the school district would be willing to consider parental input as well as what is best for the child.  When we first looked for houses a year after we got married, we focused on top ranked schools and our old school district is ranked in the top 10 in the county.  But now that we have kids, we have found that good test scores and high rankings do not necessarily make a good school. Good test scores gets the school more money, perhaps, but if you have children who are outliers and the school is rigid, it may not be a good fit. 

I was a little skeptical when calling our old school district about Luke because they were a bit arrogant on their approach when I visited them to discuss our older son and gifted education, to which their response was our model works for most kids and if it doesn’t work for your child, best to take them somewhere else (which is what we did).  But our options are more limited for Luke because of the additional services needed, but I was stil hopeful thinking that maybe they put more focus on children who don’t score as well.  Our old school district is more test scores focused so they said placement in a general Ed classroom would be “assessment” based. I asked what that meant but they were very vague. I asked if there could be exceptions made but they kind of gave me the run around, and they just said that the decision of whether a child will be placed in or out of the self-contained classroom is based on tests done every year. I think she thought her answer would make me feel better, but it didn’t. To me, it felt even more disruptive. So if your child did well one year and was placed in the general Ed classroom, but for whatever reason, didn’t do well the following year, he or she would then be placed in self-contained. This didn’t feel right to me and would be confusing to a child and potentially devastating to their self-confidence. 

I was also told that the school had separated from SEDOL and that due to limited resources, the self contained classrooms would be shared among three local districts. So although this may be a step up from being bused to a completely self-contained school miles away, it still would mean having to get used to a completely different set of typical students for elementary, middle and junior high schools. This also seemed disruptive.  

But this mother I had spoken to this week had a good experience with our old district, which may be very well the case.  Although her child has severely limited vision, it doesn’t mean he cannot keep up with the other children academically. Now this is the rub. I think many school districts think it is very difficult for a child with Down syndrome to keep up with the general Ed classroom academically, which I’m sure is definitely more work in almost every case. But the ones who won’t even try, are the ones to avoid in my book.  So my gut was telling me to look elsewhere. 
And you can’t easily identify those school districts because that philosophy doesn’t come across in high test scores and rankings or even in special needs education profiles (where it tells you what % of time is spent in general Ed classrooms) because those profiles do not break down the kind of disability (which includes any child with an IEP for anything like ADHD, dsylexia, hearing impaired, Down Syndrome). So your search can’t be based on what most parents would judge a school by. So a school that looks great “on paper,” may be a very poor fit for your child with Down syndrome (or gifted or anyone that doesn’t fall within the normal bell curve). 

You also have to be careful when talking to other parents who have children with special needs. It is easier to fully include children with a learning disability like dsylexia or a hearing or vision impairment because there are tools to assist with the curriculum, but there is usually no adjustment to the curriculum itself. But with a child who has a cognitive impairment/delay or is intellectually disabled, the waters become muddy as the curriculum usually has to be modified to that child’s capabilities, which requires more work. 

When I first started my search, several families urged me to consider the Deerfield school district.  When I first called and talked to the woman in charge of student services (or whatever the title is called who is in charge of IEPs), I was hopeful. They said their preferred placement was in the home school and tried to support the child in their local environment. However, when I kept digging, I found out that if the curriculum had to be modified in any way, the child would have to move to a self-contained classroom. So they would under no circumstances (at least I was told) modify the general Ed curriculum. I was floored. So Luke would probably be fully included for elementary likely with some pull out services for math and reading I’m guessing (that they provide in each home school), but that at some point, he would have to move to a self-contained classroom as I am guessing he probably wouldn’t be able to do the exact same homework assignments as his peers. So a district that was highly acclaimed by several families would not be a good fit for us. 

You also have to specific about feedback from families who have children with Down syndrome. Not everyone believes in full inclusion for their child, and not every child is a good candidate for it, but someone who isn’t interested in inclusion may also speak highly of a district that doesn’t truly support inclusion. So a generic stamp of approval, even from a parent with a child with Down syndrome, may still not mean that same school district will be a good fit for you and your child. 

So what to do?  You have to sit down and and think hard what you are looking for from a school district. No one is going to guarantee that your child will be fully included for their entire education in their district. They don’t know your child and their needs may change as they grow. So for us, we wanted a district that would be willing to listen to us and work with us to determine a plan that would be best for our child and help us execute that plan. We also wanted to be in a district that would be open to the concept of inclusion, even if we later determined that Luke wouldn’t be a good candidate, we still wanted to be in an area that supported the concept philosophically. 

So with that thought in mind, I set out to call 8 different school districts including our old one. A few never called me back, which I took to be a bad sign. I was surprised and disappointed that there weren’t more districts that were more supportive of inclusion. I wonder if the cuts in funding combined with the over emphasis on standardized testing (among other things) is what has caused this trend. In our old district, they have adopted an individualized model and end up clustering like-minded together to more efficiently and cost effectively teach to each child so groups of children could move at a pace similar to their peers. Unfortunately, this also means that “like-minded” ends up resulting in self-contained classrooms for children with a learning disability. I was under the impression that this customized model is well suited for gifted children, but I was surprised that there are districts who do both gifted and inclusion well (such as our current district from what I hear and hope to be true and I didn’t even know they also cater to gifted education well until after we moved). So the two do not have to be mutually exclusive.  In fact, I have heard that classrooms where children are fully included have less bullying, more sensitivity and an increased understanding of the material as explaining it to someone else helps reinforce their lessons as well as build leadership skills and increase self-confidence. 

In the end, we narrowed it down to 3. The one where we ended up had the best combination of location, house and neighborhood feel. We feel that this is the place for us, and I felt very welcome when I visited the local school in person with Luke in tow. It took a lot of work and I’m hoping that we made the right choice, but my gut tells me that we have. 

Now what to do if you can’t move because you have other children to consider or other reasons? I will still recommend doing your research both on your current district and other local ones. Try to find out what other local schools are doing well so that you know what you are aiming for or want. If your district is just inexperienced but willing to work with you, this can be a huge plus. Just try to work collaboratively and be reasonable and realistic as most districts are resource constrained. Try to be accommodating as well and help and get involved with the school, especially if you already have children in the district. I believe that having a good solid working relationship as a foundation will go a long way to having a collaborative relationship for giving your child with Down syndrome the best education he or she can get. 

And if your district isn’t so supportive?  Reach out to other families and see if it would be helpful to group together and have more influence with numbers on your side. You may also want to look into hiring or obtaining an advocate or lawyer. Legally, your child has a right to be educated in the Least Restrictive Environment (LRE) and you have rights through IDEA (Wright’s Law is a great source if you have to take this route). 

Talk to others online (there are many online support groups on Facebook) and seek out their advice. There is a wealth of knowledge out there and many people willing to help. No matter what your journey and how tough it is, know that the destination is worthwhile and the rewards will be worth it. 

31 for 21: The highs of inclusion can be worth the risk and be oh so sweet!

I’ve posted before how Luke is in a 18-24 month old preschool class with 7 other kids his age in support of starting inclusion early.  I understand not everyone will be a good candidate for inclusion, but we are hoping Luke will be.  Generally, the class has been great. But like other moms before me, questions like “is this the right choice for my child” and “will he be accepted” all went through my mind. You wonder if your child can “handle it” and keep up with everyone else. You worry about putting your child out there and how other people may react (other parents, the teacher and the kids). So when only 3 kids showed up last week, I thought maybe it was because Luke made them uncomfortable, even though logically it doesn’t make sense. 

Then we had this week’s class this morning and there were 6 kids in class. It seems some have been sick and another had plans last week. So my paranoia was completely unfounded!  When we arrived, one of the boys who has been there every week just like Luke, ran up to Luke and gave him 3 hugs!  Luke was a little overwhelmed by the 3rd hug, but the thought was very sweet!  It was definitely a great way to start class!

I had also purchased this baby walker that is essentially a harness that has straps so that you can give a little extra support to early walkers. Click here to view the one we got. I’m pretty sure we will be keeping this one, even though it’s one of the more expensive ones out there but it’s easy to take on and off and supports him from the bottom unlike the cheaper ones out there. Also, I like the fact that the straps are detachable and we mainly use it without the straps, plus it is comfortable. But most importantly, Luke loves it!  He wears it over his spio and I take off the straps and just hold him up using the shoulder straps. He takes steps with me and I think he likes his new found perspective. Before that, he would refuse to stay upright on his feet when you wanted him to – this boy could not be forced to stand!  So he’s already taken hundreds of steps in this, although we will have to work on form next.  It is also nice not to have to carry him around all the time, and we want him to know he is not going to be carted around place to place, especially at school.   

So back to school, I put him in his early walker and we took steps into class. I sat him down for a quick art project and he tried to eat the paint on his fingers!  But he isn’t the only kid to have tried that!  He played with trucks and sat nicely for books in circle time. 

Then it was time to walk to the gross motor playroom which is a small gym with a nice indoor playground and it is quite far! So it took us a awhile to get there using the baby walker, but we made it eventually!  The past few weeks, Luke has mainly held back just watching the other kids. Well, not this week!  He got right into a laundry basket of balls and was shrieking with excitement!  Then while I was talking with another mom, he crawled right over to the playground steps and started crawling up. He went up the stairs all on his own, went through the tunnel to the platform to the slide and went down the slide head first all on his own!  I couldn’t have been prouder!  Another mom said that he could keep up with the other kids and I couldn’t agree more!

Then on the slow walk back to the classroom, the same boy who hugged Luke this morning (his little buddy!), saw that we were lagging behind everyone else a great deal. He turned around and walked back to Luke and took his hand and walked with him all the way back to the room. He definitely is his little buddy and is very sweet and considerate of his friends (he held hands with another child a couple weeks ago so he is just a cutie pie!). He sees Luke as who he is and that is just his friend. 

31 for 21: What is “high functioning” anyway?

Someone shared the NDSS’s view on people first language on Facebook (click to view), and while I think it does a good job talking about people first language, I wanted to talk about one more thing that is not mentioned. That phrase is “high functioning,” and it’s a phrase that I struggle with defining, reacting to and understanding. I don’t think I’m the only one either. I know when someone says it, it is usually meant to be positive, perhaps even a compliment, but there is something about it that rubs me the wrong way. 

But the phrase comes to mind easily, even for me.  In fact tonight, we were at a local support group event, and I was talking with a mom whose son is a couple months younger than Luke and is walking already. I was truly happy for him and very impressed with his gross motor abilities, so I said that he is doing so well walking!  But the thought came to mind about how “high functioning” he is. 

Luke’s therapists also use it frequently, and I never correct it because it tends to be more clinical in context and they mean well if they are using it regarding Luke. But there’s something sterile about it, possibly demeaning depending on the tone and context on how it’s used. Kind of like someone saying “you are so smart” when talking to an older child who states something they obviously know. 

I also witnessed an adult with Down syndrome cringe visibly when someone used the term with her directly by saying she was so high functioning.  I’m sure that it was meant to be positive in nature, but you could see her discomfort with her wince when they said it who was obviously impressed by her.  I also was quite taken with her. She was an impressive woman, who was leading a webinar for an e-conference for Down syndrome, so you could watch her as she was presenting. She was very intelligent, spoke eloquently, had excellent presentation skills, and was a mother whose children you could see walk around during the session. She seemed like a wonderful mother too. I’m not sure I would do as good as a job as I have public speaking anxiety, which is mild to severe depending on how nervous I am, so that made me appreciate her presentation skills that much more.  

So I see her as an accomplished woman period. The fact that she has Down syndrome does make it that more impressive, even though it shouldn’t be in an ideal world, and I know many parents would look at her and see her as what they would hope for their own children with Down syndrome in the best of circumstances.  Because of this, I wonder if people think of her as a rare oddity because they think it not possible to have a person with Down syndrome be so like everyone else.  I can’t recall if she had mosaic Down syndrome, but I don’t know if that truly matters in the context of this debate.  Because saying she is so high functioning (compared to others with Down syndrome I am assuming) does seem insulting to her regardless of mosaicism or not, and I think she took it that way too. 

So if she felt insulted (and she handled the remark graciously), then how do others feel when being described this way?  So when someone says “your child is so high functioning,” or says “maybe you will be lucky and he or she will be high functioning,” what should you say?  I like how another mom blogger put it. She said that you should say that there is no “mild” form of Down syndrome, that you either have it or you don’t. That abilities vary in range just like in the typically developing population. I like this response best.  

Even for Luke, he has his strengths and weaknesses. He is not very motor driven and still only crawls to get around, but does that mean he is “lower functioning” than others his age, even if he doesn’t walk until he is older?  Or that he doesn’t sign words and infrequently speaks words (which his older brother who is typical was like too, although he started speaking more at 15 months), does that mean he is “lower functioning” than others his age with Down syndrome?  Perhaps. But he also eats and drinks from a cup very well, even better than some typical kids his age.  He uses his pointer finger well. And he is a good problem solver and can communicate well in other ways. 

But who likes to be constantly compared to other people?  My parents did that to me a lot when growing up, and I can tell you I hated it!  Even if they were complimenting me, I got upset. So I can only imagine how this would upset a parent, child or adult with Down syndrome. I know it’s human nature to do this, and it’s only reinforced by statistics we read or hear at the doctor’s office of when babies or children should be hitting milestones. And for identifying conditions like autism, it is important. But let’s not make it how we live our lives or talk about our children.

Even for adults, what does it mean for someone with Down syndrome to be “high functioning?”  Does this mean they have a job, live independently, have friends, and are dating or are married?  Isn’t that just being socially integrated?  Because aren’t there many people who are typical out there who are not “high functioning” by this definition?  Also, what do these “accomplishments” have to do with Down syndrome anyway?

So can we stop with the “high functioning” and talk about abilities instead?  I still don’t have a great answer to this one, other than not use the term at all. So maybe we can say that Luke has good fine motor abilities and working on gross motor skills. Or if you meet a child or adult who has Down syndrome that is what you consider “high functioning,” and you want to compliment them, then you can probably say something positive that is specific like “you are so good at walking” or “you are such a great sports fan (music enthusiast, artist, fashion diva, etc.)” all depending on the person and situation.  The point is to make the compliment specific to them and what they do (or know) well. Saying “high functioning” just doesn’t cut it, and I think it ends up being a backhanded compliment. 

But I won’t bite your head off if you say it, especially if you mean well. I know we have a long road ahead of us for true inclusion, social acceptance and practical sensitivities. So let’s take awareness and acceptance one person and day at a a time. 

31 for 21: Luke’s favorite things #3

Luke has always been an observer and is often just content watching the action, possibly partly due to having low tone. So it’s sometimes hard to get him to get moving, especially during PT when he stubbornly want to stay put on his cute little tushy. 

But he loves the bouncy house and even used it in PT sometimes, he bounces, goes down the slide independently and up the slide with some help. I hear that many children with Down syndrome are not very active, but I think with the right motivation, they can groove and move with the best of them. It is just a matter of “tricking” him to work hard without him realizing it, and that means making therapy a ton of fun!

Here is Luke going down the slide all on his own!

31 for 21: Luke’s favorite things #2

Luke loves his tunnel – he loves feeling the texture, crawling through, and just hanging out in there, including when we rock him in there side by side. 

Today we had a joint therapy session with Luke’s OT and DT today and we pulled out the tunnel, which he just loved!  He even crawled out, climbed a slide, slid down and went back into his tunnel.  Here is a clip of that:

  
We are so grateful for his therapists, and if you have read some of my other posts, I am a huge advocate of Early Intervention, which provides 4 out of Luke’s 5 weekly therapies. We have an awesome team of therapists, many who have had extensive experience with children with Down syndrome. With their help, Luke was able to start off doing baby led weaning which developed his self-feeding and fine motor skills and I became so much more knowledgeable about how to integrate therapy into play- using simple things like bead necklaces at the dollar store and even making OT sensory/fine motor lap tables. 

Thank you to all the therapists out there who work with families like us so our children can be the best that they can be!