Newly Diagnosed Families: Handling the Stares and Comments

Posted Thursday December 29, 2011 by Melissa


When your child was diagnosed, did the doctor ask if you were ready to handle a little PDA? No, not the kind that’s against the rules in school…. Our MPS kids are often known for their Public Displays of Affect. No, that wasn’t a typo. Affect, meaning their affect from the disease. Affection, we’ll take that all day long. But affect? That’s a little tougher.

This is often one of the most difficult issues for parents of newly diagnosed or younger MPS kiddos. In the younger years of the disease, our kids often look “normal” and act “normal” in many ways, but are often hyper, aggressive, inattentive, dangerous, stubborn, and don’t understand a lot of language and social norms. Interestingly enough, I’ve found that the fantastic effects of ERT in MPS II (making our kiddos more mobile and having more energy, looking more “typical”) often make it more difficult to control our children in public and to operate our family without disapproving stares and comments from strangers.

Unfortunately, strangers are often not the only ones who may stare, make comments, and simply have unreasonable expectations of our children. Family members sadly often fall into this category as well. While some of these strategies can be effective for family and friends, sometimes that can be a much more sticky situation. We are extremely lucky to have incredibly supportive family members and friends, but I know that is not always the case for many other families. Helpful suggestions for applying these or other strategies for family/friends would be greatly appreciated!

I don’t pretend to know all the answers. Case and I may get a multitude of stares that I don’t notice or care enough about, but I’ve found a few practices to be helpful that I thought I’d share. For newly diagnosed families especially, who may still be reeling from the notion of disciplining and dealing with their child’s behaviors just as “problem behaviors” instead of the effects of a disease, I hope this will be helpful. Also, special thanks goes to the reader who suggested this topic.

  1. We need to understand the disease, its effects on our child, and our child’s actual ability to control certain behaviors. It is quite difficult to manage our expectations of our child and treat them appropriately if we don’t really understand what’s going on. It is often hard to accept (for us and others) that we need to treat them differently than say, their unaffected siblings, cousins, or neighbors, but we do. Cognitively affected MPS children often have limited ability to control their hyperactivity, climbing, jumping, aggression, repetitive behaviors, fits, unique activities like spanking, grabbing, or touching others, etc. The key is to constantly be testing what they seem to be able to control. Do they understand consequences? Do they understand timeouts? Do they repeat a behavior only minutes after you’ve clearly told them to stop? Is the behavior akin to breathing for them, they need to do it so much? Depending on the answers to those questions, certain behaviors simply need to be managed instead of disciplined or prevented, although we can often try to prevent the triggers of certain behaviors. Before the clinical trial, Case would have incredible fits if plans were changed. We tried to prevent this with picture schedules and walking through everything, but they often still happened. He could not control them, anymore than he could and can’t control his need to climb and jump from furniture. We would simply endure the fits and try to comfort him, whether in public or not, all stares aside. As far as jumping and climbing go, we have the furniture set up in a way that is most safe. He still cannot control this proprioceptive need. Another example is that at McDonald’s, he used to try to climb and sit on others’ tables, eat their food, grab their … (insert nameless body parts). I would follow him around to try to prevent things and redirect him, but if it happened, my response was an “I’m so sorry, he doesn’t understand” and move on. I’ve also bought a number of replacement fries and drinks.
  2. Others get their cues from us, how WE treat our affected child. So if we treat them as if an MPS behavior is their fault, is something they can and should control, or something worthy of discipline, then a stranger will look at them and treat them in the same way, but often worse, since they don’t love them and don’t have an understanding of the disease. Harsh scolding for uncontrollable behaviors not only can make our child feel bad for something they don’t understand, but allows others the freedom to perceive our child as misbehaving and us as unable to control him. Trying to prevent and manage behaviors still involves public displays of love, comfort, and explanations in the way our child can best understand. Sometimes overtly so, as the next point explains.
  3. Sometimes our words and actions are for the benefit of others. When Case misbehaves, while correcting and managing him is my primary objective, I sometimes have a secondary objective of educating those around us who might have no idea that Case has a disability. There are ways we can speak to our child, things we can say, and a tone we can use that 1) clearly indicate he has a disability and might not have full control over his behaviors, and 2) give others a gauge for their expectations. A tone that is encouraging and “cheerleader-ish” (sometimes accompanied by clapping!) is what often works best to manage MPS behavior in any event, but it can also convey to an onlooker that there may be something more going on than meets the eye.
  4. Handicapped stickers can be supremely helpful. Case’s “good” stroller chair has an obvious handicapped sticker on it. While I am not for exploiting the issue, I am happy that it gives people a cue that something is going on that is not easily seen and they can be free to cut him a little slack. I notice a difference in the slack department when Case is in this stroller versus our travel stroller (a Special Tomato jogger) that looks more like a traditional stroller and does not have a handicapped sticker. You can purchase handicapped stickers here and at other places online – these are great for strollers, especially those that look so “normal” it is often hard for strangers to even understand that your child may have challenges.
  5. SavingCase T-shirt spreadAwareness shirts are often helpful in stressful circumstances. When we expect to be in circumstances where Case’s behaviors are most problematic, such as airports or places where we need to wait in line, we grab one of our SavingCase shirts or other MPS shirts. If people tune in even a little bit, the shirt might also give them a clue that something might be going on with your child and they should cut them a little slack. I love it when I have to stand in line with Case and I wear one of his shirts. I can feel the people behind me both reading it and watching Case struggle with all his might against the concept of standing in line. They often then open up and sweet talk him and talk about how adorable he is. The slack is tangible. We try our best to manage his behavior, but in the end, he deserves the slack.
  6. Case business card - frontYour child can have a business card too. We are never without business cards that we had made up for Case last year. They have a dual purpose: they are both to raise awareness and give information about his condition and also to help people better understand his behavior. One example occurred when we were flying to UNC for the clinical trial. Case still has trouble with kicking the seat in front of him. He was tired and whiny on this particular occasion and would not listen to reason, even as much as he has progressed. I spoke to him clearly and firmly, some for the benefit of the man in front of us (a là #3 above) who kept turning around to look between the seats at who was kicking him. Finally, the gentleman spoke, asking me to please have him stop kicking the seat and that he had kids too and understood how they could be, but could I please get him to stop. So, on that occasion, I did not succeed in my language to get him to understand that Case had challenges. Case Business Card - backI was infuriated. Being candid with you, that sinful part of me wanted Case to keep kicking so that man could turn around again and I could explain to him about children with rare diseases, challenges, and tolerance, about heartache, tears, and death. But I was blessed that he didn’t. We arrived in Raleigh and I struggled with what to do while I watched him waiting for his luggage. I still wanted to strangle that man. Instead, at the great suggestion of my Dad, I went up to him and first apologized for Case kicking his seat, then gave him a card and explained that Case had some special challenges and needs. So thankfully, by the grace of God, a situation that could have been nasty turned into an awareness opportunity. I don’t know who that man is or whether he’s possibly reading this now (I can only hope), but I think many of us were him before we were blessed with our MPS child. How many of us had gotten frustrated with the screaming baby on the plane? Lesson learned, my friend. Lesson learned.
  7. Let it go. Frankly, there might be many more people staring at Case than I notice, but I try to follow two rules. First, when I do notice it, I try to give them the benefit of the doubt. They might be a special education teacher, a nurse, a doctor, a therapist, another special needs parent, or just someone who has empathy, curiosity, or compassion. Second, I let it go. Our kids are so adorable and so pure and unfiltered that it is impossible not to love them when you know them. I feel compassion for those who are not blessed enough to get to love an MPS child.

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4 Responses to “Newly Diagnosed Families: Handling the Stares and Comments”

  1. sarah mitchell // January 4, 2012 at 10:50 pm

    thank you for sharing your thoughts and perspective on this!

  2. […] or behavior. I’ve even written a post about some strategies for handing these situations (see Handling the Stares and Comments). So with those experiences, it’s incredibly wonderful when something like the Positive […]

  3. […] stickers. First, before ever flying, pick up a few handicapped stickers for your stroller. As we’ve noted before, we notice a big difference in the “slack factor” for Case’s behavior when people […]