Sunday, May 31, 2015

"That Down Syndrome Child"

This weekend, we were invited to a birthday party for a little boy who was in Colin's daycare class last year and now is also in Colin's karate class.  This particular little boy has always been one of those kids who makes me feel hopeful for Colin because he has always been patient and kind with him. It was going to be held at a local park in town that had an adjoining playground. We were all looking forward to attending and spending time with his family. 

We are in a particularly tough phase with Colin right now because he seems to be stuck in the middle socially between WANTING to be a part of the group or playing with peers, but really lacking the skills to effectively carry through on a social interaction. While his communication has come a long way, he is still not able to consistently initiate a conversation or play interaction and follow through. It is easier for him to play by himself most of the time because peers either don't want to do what he is doing (once he gets something into his head, he's pretty set on what he wants to do) or he just isn't able to effectively ask them to play with him. Even when kids try to get him to play, he doesn't always follow through because it's a task he's not interested in or comfortable with. On the flip side, when he DOES try to initiate a conversation or interaction, he's not always understood so even in his attempt, he's not always able to get others to play with him. A few weeks ago when we were with friends of ours for the parade and parked at one of THEIR friend's houses, Colin tried to go up to the little boy of his friend and so I tried to help him initiate the conversation.  However, he didn't want me helping and he kept saying "I do by myself!". His phrases were so choppy that the other little boy (although very nice), didn't understand what he was saying.

On a daily basis, we are working with Colin to remind him that it is not acceptable to use his hands to communicate and that he must use his words. This is usually surrounding incidences with Kailey out of frustration because she is bossing him around, not giving him something he wants, is using something of his, etc. This typically occurs due to a few types of scenarios. For example, Kailey had a book that Colin had been using and wanted back. He kept saying "I want my book" to her but she flat out ignored him. I watched him say it again to her and she kept reading pretending that she didn't hear him despite the fact he was standing right next to her and so finally he just grabbed it out of her hands. It obviously was not an appropriate action (and I had to remind him how to ask appropriately, and her to actually listen), but the only way he could effectively get what he wanted in that moment. Another incident occurred yesterday; they were in the bathroom together and I walked out for a minute to get something.  Kailey was making obnoxious noises and Colin asked her to stop, a request she ignored and continued to get louder. He asked her to stop again and when she didn't, he hit her in the leg, an action she responded to by crying. It wasn't appropriate, but he DID try to use his words and again, she didn't listen.

In addition, there are other times Colin will initiate play using his hands because he THINKS it's what's right to get someone to play with him. For example, in times of "free" play where kids are just running around, Colin will often run up to them and push/hit. It is not out of attempt to be mean, but rather, because he is trying to initiate some sort of play with them like a game of tag or "come and get me!". If you watch kids play, this is actually a pretty typical action that kids do, however, with the typical child, it usually coincides with the appropriate words initiating what they are looking for. For example, on the playground at the party yesterday, there were times the kids were rough with each other but it was all out of fun. I watched Colin get pushed a few times out of fun or play with other kids saying "I got you" or "come and get me". I saw another child (not with the party) take the ball he was playing with and chuck it over the side of the play structure). Colin's same actions are not always followed up with words so he is often scolded for it (you'd be surprised how many times kids will tattle on him when he's had the same thing done to him). A little boy recently got a time out for pushing Colin so hard on the playground at daycare that he fell down. Colin later pushed him and every day that I pick Colin up since the incident the same boy runs over to tell me that Colin pushed him. A dad even stopped me at daycare one day to tell me he felt bad for Colin because I had yelled at Colin for hitting Kailey when the father watched Kailey hit him first; an action I never saw.

It takes a lot of work with Colin every day to help him appropriately socialize, even with his own sister. He just doesn't understand the social rules the same way other kids do, so we often have to practice scenarios, set up sentences for him, and remind him to use his words and not his hands every single day. It's frustrating for us as well because even when he DOES use his words, he is not effective in getting his point across. You can tell that HE has become very frustrated lately.

We ended up being at the birthday party for over 3 hours. For much of those 3 hours, the kids were all running around on the playground playing different activities. Chris and I followed them around through much of the party, especially because Colin likes to climb now and with the flip flops on, we were worried about him slipping and falling. I do not like them to be out of my sight, particularly Colin, because although he's not a true runner, he can get something in his head that he wants to do and just sets off to do it. In addition, I just feel like I need to control situations with Colin and help him with appropriate play. Kailey was playing with the group, but for most of the beginning, Colin was parallel playing or off by himself away from the other kids. After a long time, and a LOT of observing, Colin finally started to work his way into playing with the group. The birthday boy tried a lot to get Colin to play and participate and even with our urging or help, Colin never fully immersed himself into the group. However, he finally started to play with an older boy that came with his lacrosse stick, and then Kailey and the birthday boy and their friends, and so we slowly started to ease ourselves out of being right on top of him.  I was so happy that Colin was actually playing WITH the kids and that it was going so well, that I let my guard down of having one of us follow his every move. We had been taking turns or following them around together, and then we started watching from the outskirts (it was a fenced in playground), as were most of the parents.
Right near the end, we were standing at the side of the playground talking with another mom and I had just seen Colin and Kailey run through the middle of the play structure and then head towards the slide. An older man and his wife came storming over carrying the little girl (not with the party) who had been playing in the midst of Colin's game of lacrosse asking for the parents of that "down syndrome child". I actually couldn't speak for a second because I was still processing what he was asking. So he says again, "where are the parents of that Down Syndrome child?". I finally answered with, "well, he's my son". I immediately felt as though I were going to throw up.
He went on to tell me that Colin pushed his granddaughter and she fell down on the stairs. He demanded to know why I wasn't watching Colin more closely to which I responded with the fact he was in my line of sight. I asked them to explain exactly what happened and all they would say was that Colin pushed her. I apologized for the incident and for her falling but explained that Colin had difficulties effectively communicating so it was probably more than him just pushing her. He continued to tell me I should have been watching and stormed away. I went to find Colin and asked him what happened. He said "I pushed" and looked down at the ground. My emotions were in overdrive and so I said/rose my voice "why did you push?!" to which he responded with "she poked me". I took Colin to their car to apologize. Before we could get to where the Grandmother was putting her in her carseat, Colin said "I'm sorry" to the Grandfather and he just said to him "don't apologize to me!". He wouldn't even look at us so I finally said that I was sorry the incident happened but they needed to remember that Colin was a little boy and not the "down syndrome child" they were calling him. I couldn't even stand there for another minute. He clearly didn't want to listen to anything I had to say. Thinking back now, there are so many other things I would say and ask but I just had so many feelings running through me in that moment.

Another person came up to me and said that she wanted me to know it wasn't exactly as the man described and Colin didn't even really push her the way they said. However, in Colin's mind, a poke warranted a push, an action that is clearly not appropriate. This is where I feel so sad for Colin because while he knows right from wrong, he does not always handle things the way he is supposed to. I feel so sad and really haven't stopped crying much about it since it happened. I feel sad that these kinds of things don't come so easily to him and I feel sad that he doesn't always understand the same way other kids do. Most especially, I'm sad that I let my guard down and watched from further away instead of up close since it was going so well because then something like this happened. I feel Colin's frustration as my own.
He is a little boy who didn't handle a social interaction appropriately; but all they saw was "that down syndrome child". This a scenario that makes my heart hurt in many ways.


viv said...

Thank you so much for sharing this. You did an amazing job of advocating in the circumstances. We are having some issues with playing too - it is so good to know we are not alone !! An Colin's speech - amazing that he could share that she poked him - we are still not there yet- so it's all one sided

AEP said...

Hugs to you, Kelli. You and Chris are raising a sweet and wonderful little boy. Quite frankly, Kailey and his interactions sound identical to that of Robert and Charlie. And you probably handle it much better than I. At any rate, Robert asks and Charlie ignores. Robert demands and Charlie ignores. Robert takes or hits and Charlie hits back. And though Robert, being on the timid side, wouldn't likely push back on a playground, you can bet that Charlie would, despite knowing right from wrong.
So even if Colin has difficulty expressing himself, the way I see it is that he is similar to other friends his age. He just has the added classification working against him. Shame on that man!

Chin up! All of his old Growing Tree pals would stick up for him in a heart beat. :)

Anonymous said...

I don't even know Collin or your family but I do follow your blog and I want you to know that Collin is such a special little boy. Although I don't know your family personally I do feel very protective of Collin! I think it's very sad that somebody would refer to him in such a way. Although there is definitely nothing wrong with Down Syndrome, it's the way that man said that to you that makes it such a demeaning approach to a situation. They are all children! I know most of Collin's issues are probably related to not being able to effectively communicate even when he's trying so hard to get his point across. Children are not the most patient listeners either, which makes it even more difficult for him to communicate with his peers, I'm sure. Basically I just want you to know that I am so sorry you encountered such a heartless person at a birthday party for a child. I think your family is truly amazing and I am so happy that Collin gets to grow up in such a loving, nurturing and accepting family where he gets to experience unconditional love! You really are his best advocates and you're doing such an amazing job!

Anonymous said...

That man was ignorant. First Colin is a little boy, secondly he is a child. Every child needs to be treated with respect. Colin is one lucky boy, he has parents on his side. Learning right from wrong is a life long process. (This is apparent because this older gentleman, is still in need of learning compassion) God bless you and your family. Colin will find his groove and make this world his own.

Atlantic Canada Mama

Anonymous said...


I'm so sorry that you went through this ordeal yesterday with your beautiful Colin. I was crying at my desk as I read your words. I feel sad also for the ignorant man who was so quick to label Colin. I would have been stunned too. As a mother, we want to protect. We want to shield and make our children safe, have them feel no pain, while also teaching them right from wrong. Colin seems so well adjusted and even though he learns differently, he is a little boy going through the same struggles of adolescence. He is a sweetheart and please don't one man rock all of the good that you and Chris have accomplished with him and he with you! Colin teaches others as much as he learns from others. He has something to give and something to receive. And your family is truly blessed to have each other: the strong parents you are and the three gorgeous kids you have brought into this world! I hope that the man went home, took a deep breath and realized the harsh words he spoke in his blind fear for his own grand-daughter. You can only hope and pray that he may have learned from his errors. And you plow on, knowing you are doing the best you can and Colin is a happy healthy little boy. God bless!

Sarah "Fenty" Pettorsson