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. 

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31 for 21: Luke’s favorite things (original)

So I found the draft of the original post I thought I had lost forever, so I’m sharing it now even though part of it is redundant so I apologize!  I also may repeat some of these pics and clips when I post of therapy through play in the future.  But he’s cute so you won’t mind, right?

This post is for my own selfish pleasure. With the ton of pictures sitting in iPhoto, which I can’t navigate well, it is nice to have a post of all the favorite things your little ones love to do. They grow up so fast!

LukeBath
1.) Baths! This is an old picture of Luke because these days, I usually put a bathing suit on and put Luke in a swim diaper and we take a “family” bath in the big jetted tub in our new house so no chance for pictures now. Is that TMI? It probably is, but it’s so much fun to take a bath your boys if they are young enough to want to do it!  Luke loves to splash around and play with the containers of water. One of my favorite ways to bond with the boys ūüôā

  
2.) Pulling to stand and getting into everything, especially the refrigerator!  We have one of those fridges whose handles run the whole side of both doors so very easy to open!  He loves trying to rattle the bottles around on the second shelf, and fortunately hasn’t taken any out yet!

  

  
3.) Much to my husband’s dismay, Luke loves to unravel toilet paper!  Once he unraveled a whole roll!

   
4.) This is actually combining two of his favorite things: his tunnel and his bouncy house!  He and his brother even crawled through the tunnel down the slide!  Tons of fun, who wouldn’t love this?  

  
5.) Tackling and playing with his older brother. Good old brotherly love!

  
6.) Luke loves to swing on his Playaway Rainy Day Indoor Playground platform swing!  We bought it directly from the manufacturer Playaway and they gave us a great deal on a cosmetic defect item, which saved us a bundle!  They are an awesome company whose product are great quality and so easy to set up!  I totally recommend buying directly from them. They have a 14 year old nephew with Down syndrome who doesn’t love very far from us and were a pleasure to talk to!

  
7.) playing on the keyboard. Now this is the mother of cause and effect toys!  It is a Yamaha keyboard we got as a gift for our older son, but Luke loves this thing! The keys light up as you play it and it plays a ton of pre-recorded songs!  Such fun!
8.) and we can’t forget about eating! Luke has been an little picky lately, maybe due to teething or a cold but he’s done baby led weaning so he’s gotten really good at self feeding!

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!

31 for 21: A day in the life

So there is a site out there called a Day in the Life with Down Syndrome (click here to learn more) and it’s very easy to participate, especially if you are into social media, which I’m not but this project inspired me to get off my tush and get involved!  So I created my Instagram account, used Phonto to create a cool poster picture of Luke featured here (thanks to a mommy blogger who clued me into this awesome app!), signed up for YouTube (yes I know I am behind on all this!) and posted away!  All you need to do is add #lifewithDS in Instagram posts and fill out a form on their site to share videos or posts. 

So in honor of that project, I thought I would share with you what our day was like. First of all, I’m recovering from a stomach bug and the high sugars fallout from that, so I haven’t felt like myself lately. Despite that, we enjoyed both OT and DT therapies outside and Luke did great swinging, sliding, playing with toys on the blanket and just basking in some vitamin d filled rays. Mild fall weather is perfect for some outdoor therapies and we have a perfect yard for it!

  
While inside, we had a plumber fix a leak from a previous job (hopefully they will fix the huge hole in our ceiling), which we discovered this past weekend along with a nest blocking our exhaust so our heat wasn’t working, which is part of why Luke’s head was being held in the picture above since he hasn’t slept well probably because of the lack of heat at night. He usually slouches or tilts his head when he’s very tired. Not the best part of our week…

But after a good nap, Luke is rested up for more fun!  Lately, he has been into the Wiggles and his favorite songs are Hot Potato and Rockabye your Bear. He has a mini piano Wiggles toy (a favorite inherited from his brother) that has buttons that plays 4 songs and he plays these 2 over and over!  But he’s made up a game where during the Bear’s Now Asleep part of the song, he will crawl behind me and sit out of sight in hiding. At which point, I go “where is Luke?” And he touches my back to let me know where he is. Then I bend over on my knees with them spread, and Luke crawls between my legs and laughs while I snuggle his neck.  It is a great end to my day. In fact, Luke always knows how to make me feel better, and my time with him and my older son are the best parts of my day!

31 for 21: My thoughts on Why the Down Syndrome Advantage Exists

My answer to why the Down Syndrome advantage exists is simple: we want to be better people for our children. Yes, most parents feel this way for all their children, but having a child with a disability makes us want it so much more. We want a better world for our child to grow up in. A world that welcomes our children with open arms and that fully includes our children in schools and society.

Let’s take a step back. What is the Down syndrome advantage? The advantage is that having a child with Down syndrome has a positive impact on people’s lives as well as that 99% of people with Down syndrome are happy with their lives (click here to view the article). The impacts are quite impressive. The divorce rate is actually lower for families who have a child with Down syndrome than those with a non-disabled child. 88% of siblings reported that they felt like better people having a sibling with Down syndrome. 79% of parents or guardians reported a more positive outlook on life because of their child with Down syndrome (click to view the article). Wow! How is that possible?

Let’s start with the survey result that 99% of people with Down syndrome being happy with their lives. So why is this the case? ¬†The article talks about people with Down syndrome having high adaptive skills despite having lower than average IQs. I like to think that people with Down syndrome have a high emotional IQ, meaning that they are more clued in to emotional cues in others and have a high level of empathy. I do not think that their high level of satisfaction with their lives have anything to do with an intellectual disability, although some may argue that. I do believe that there are people with intellectual disabilities that do not express happiness with their lives, so I think that connection is invalid.

Despite what the numbers say, I can only speak from experience. Based on that, I can tell you that Luke is a joy to be around and his smile and laughter is quite contagious. And when you have a child that is filled with so much joy, that makes you happy too. And you want to do your best to preserve that happiness for your child so you want to set a good example for others to follow with hopes to make the world a better place for you child with Down syndrome to grow up in. So the desire for a better world for our children is stronger when you have a child with a disability that brings such joy to your heart.

Having such a strong support community also makes it possible to have a more positive outlook on life. Everyone will have his or her moments when life is hard and we feel discouraged. But there is such a strong sense of community online and locally that makes it easier to find support and comfort 24 hours a day!  The care and support you get from essentially complete strangers also helps keep a positive outlook on life, despite the challenges you are facing.

So how about marriage? ¬†One can make the argument that marriages where they decide to keep a baby with Down syndrome is already pretty solid, but wouldn’t the stress of having a special needs child strain the relationship? ¬†Or how about cases where the parents found out after birth? ¬†My non-scientific theory is that both parents want to be better people for their children as noted above, and seeing that in your partner makes you love them that much more. I can definitely say that is the case for us. When you see your partner be loving and caring, it warms your heart. I also think being a team to help raise a child with Down syndrome helps strengthen that bond of partnership. And the stress of raising a child with Down syndrome is going to be based on individual experiences, of course, but I think that it is less than what most people would expect.

I also think that having a child with Down syndrome changes the way you look at life and things, mainly in positive ways. I know that having such difficulty having a second child in general made us so grateful to have a child that the Down syndrome diagnosis didn’t bother us very much. When you have struggles or challenges, you tend to have better coping skills and perspective. They say this sometimes when looking at children suffering from depression because they weren’t used to having struggles or in people who always get what they want because they don’t appreciate what they have. So it’s kind of a similar argument. Having perspective on a disability makes you appreciate the little things in life from enjoying the small milestones your child achieves to a stranger stopping to talk to you about your child. ¬†Regardless if they are completely politically correct or not, they usually mean well, and it’s nice to know that there are people who are just generally nice out there. I can deal with ignorance, but I have a lot less tolerance for cruelty.

I have heard some say that it takes a special family to raise a child with Down syndrome.  However, I think that having a child with Down syndrome gives us a more positive perspective, a bond with mere strangers that give us support when we need it, and motivates us to be better people.  I think that our children teach us valuable life lessons that shapes our character in better ways. So I like to think that having a child with Down syndrome ends up making you a better person through all of that, and that is what makes us exceptional because we are fortunate enough to have such a beautiful child be in our family.