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: 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!

31 for 21: Luke’s favorite things #1

So I spent over an hour creating a post yesterday of Luke’s favorite things, and at 1am, #7 crashed the blogging app (must have been the videos!) without saving a thing, so I’ve decided to try again and do one item at a time. It’s not necessarily to stretch posts out for the challenge (and I’ve already missed a few days due to illnesses), but I also like having these sweet moments in one place since there are a ton of photos in iPhoto, which I still don’t know how to navigate well!

#1.) Unraveling toilet paper. Luke is totally into textures and eating paper whenever he can. In fact, I forgot to take away a sticker from him that he got at the doctor’s office today (for a sinus infection) and he ate 2/3 of it by the time we got home!  But I digress.  Whenever we forget to close the bathroom door, we find him surrounded by unraveled toilet paper and once he unraveled almost an entire roll!

Here he is in action:

  
I love the mischievous look he gives me since he knows he shouldn’t be doing this! So despite the mess it makes, his smile makes it all worth it!

31 for 21: the Journey up the Slide

Luke loves to slide. He enjoys sliding down the slide in our bouncy house (click here for a video clip) all by himself. The one in our yard is a bit more challenging. But it doesn’t stop him from trying. 

  
He stops at the bottom of the slide by flexing his feet at the bottom and turns around quick as a wink to try and go up the slide again. 

 

So far, he can almost get to the top if I help stabilize his feet on the slide so he can climb up, which is pretty impressive given his low tone.  But it’s a lot of work to go up this slide for anyone, so sometimes I place him on the slide almost at the top. 

It’s a long way up, though I’m sure Luke feels a great feeling of accomplishment when he is able to do it with a little help. Kind of like our journey in life, it’s hard work but the incredible ride down is all worth it in the end. 

You can do it Luke!  We believe in you! 

 

  

31 for 21: Inclusion as a Way of Life

The fact that Luke has Down syndrome is not a big deal in our house. Our older son doesn’t see him more than a cute “baby,” although Luke is 20 months old. He’s a little below average size wise than typical for his age and he’s not walking yet, but the differences are not great because there is no one close to his age to compare him to.

But the differences are more apparent when we are in Luke’s 18-24 month preschool, a mommy and me class that meets weekly for an hour. He is the only one with Down syndrome, and in fact, every other child in his class is “typical.”  This means that he is the only one who is not walking, his fine motor may not be as developed as they do their arts and crafts, and he may not be as verbal as the other children. But he loves circle time, is totally engaged during story time and singing.  And even though he either has to crawl places or I have to carry him around, he enjoys engaging in activities and play, evidenced by the photo above!

Most of the moms are welcoming. I haven’t had a chance yet to talk intensively about why Luke often has his mouth open and can’t walk yet but that he will. But most of them treat me like any other mom and treat Luke like any other child in class, which is exactly what I had hoped for. 

Now the concept of inclusion means different things to different people, and to many, it is just a way of life- going on with their family life with no major adjustments, signing their child up for community events along with typical peers, etc.  A common formal definition refers to having a child in the general Ed classroom at school. For some children, this is a great environment because they tend to have better peers to model behavior after versus those in a self-contained special education class. The argument being that a child with Down syndrome shouldn’t be the one setting the example in the classroom, that they need typical peers to model after and motivate them to push themselves skills and learning wise.  The other children in the class also benefit from immersive sensitivity training, which tends to lead to less bullying, and more open acceptance of differences. I have also heard that children learn better if they explain lessons to others, reinforcing what they have themselves learned. 

I wish we would see more of this model, although some school districts around us have become very test focused and adopted an individual differentiation model, which typically includes clustering like minded together to more cost effectively advance the curriculum at a quicker pace. But I think they lose out teaching the children many life lessons by using this approach. I hear our school district does a good job catering to both special needs (and is open to inclusion) as well as gifted education. Seeing that our older child is highly gifted (which presents its own challenges), I am very interested in seeing how they manage both groups in the same classroom, if they truly are supportive of inclusion, which I am hoping they are. 

Young children in daycare can also benefit from an inclusive setting if done properly. I met a one year old that started to walk shortly after moving up to the toddler room, and his parents believe it was because he had typical peers to motivate him to get moving!  The parents were anxious at first, but their son surprised them with how well he did, which goes to show you how much a child can accomplish if given the opportunity. 

But an inclusive setting is sometimes not the best fit for all children with Down syndrome as I’ve talked with some parents that have felt it was better to be in a self-contained classroom for their child. I believe that parents know their child the best, and they should not be judged for doing what they believe is best for their child. Their children might be dual diagnosis, have sensory or behavior issues or other reasons that their parents have that make them feel it is the best choice for their child. So although many in our community push for inclusion, it’s important for us not to make others feel inadequate for their parenting choices that they feel is best. 

Even though it is too early to tell, we are hoping that Luke will be a good candidate for inclusion because we want him to be as independent as possible and have many options so that he can have many options when he grows up, whether it be to get a high school diploma (versus certification), go to college, get a job, get married, live independently, whatever his heart desires. I want him to be able to have the skills and confidence to at least try. 

And these days, it is becoming more common to have college programs for our children. It only makes sense to me, as I think that many families and people with Down syndrome want this. I heard that a major cause of depression is when their typical peers move away to attend college, which is understandable as they probably feel like they are missing out on a huge milestone in life.  So from what I have read, if you want your child with Down syndrome to attend college, they will be more successful if they are independent in an inclusive setting as much as possible.  So that’s why Luke went straight to baby led weaning and skipped purees and why we looked for very early childhood classes when his developmental therapist suggested we get him in those kind of classes so that he knows what to expect when he transitions from early intervention to early childhood when he turns 3.  And the concept of inclusion will contribute throughout our lives. 

So even if your child isn’t in an inclusive setting in school, there are plenty of opportunities to engage your child into an inclusive setting. That could include buddy sports, gymnastics classes, park district programs, religious institutions (whether it be church, synagogue, temple, etc.) and even going to events, restaurants, errands, etc. I believe the more your child is out in society, engaging with others, the easier it will be for your child in the future. And by simply involving your child in these activities, your actions are advocating for your child and helping others get educated on what children with Down syndrome can really do, which I like to think is pretty much anything they put their mind to!