Silent Siblings: MPS and special needs can take their toll

Posted Monday May 06, 2013 by Melissa

In so many ways, our lives as parents revolves around the constant needs of a medically involved, special needs child. But what about their unaffected siblings? How do we protect them? How much do we say to them? How do we spend enough time with them when all of a sudden we spend days and hours and sometimes weeks in hospitals, doctors’ offices, therapy clinics, IEP meetings, clinical trials, and the like? Do they eventually “get used to it” or can they stay silent and just become more resentful over time?

Clearly, I have no easy answers. I’ll be honest here. Our kids struggle just as many of yours do. I am no psychologist so part of me hesitates to turn to the easiest answer – all of the family issues related to having an MPS child – but it is difficult not to see the impact on a young child when you consider the impact on an entire family.

I’ve spent some time considering the potential impact of an MPS child on a family, if only for the means to consider how we can improve life for unaffected children, and hopefully the issues they face related to having a brother with special needs.

  • The less amount of time as a family.
  • The less 1-1 time between parents and unaffected siblings.
  • How the MPS child interacts with their siblings. Are they aggressive? Annoying to them?
  • The greater responsibilities thrust on siblings because parents are now otherwise engaged with doctors, hospitals, therapists, etc., and all the scheduling, rescheduling, insurance issues, school issues, that go along with it.
  • The emotional struggle to understand what is going on.
  • Embarrassment over the MPS child’s behavior, look, or needs.
  • Less patience as a parent with trivial concerns because of dealing with the weighty concerns of life, death, and health all the time.
  • Less money to buy, spend, entertain, and otherwise interact in ways the family may have been used to prior to the diagnosis.
  • Inability to travel, see family, go on spring break trips, etc. because of doctor/infusion/therapy appointments, sudden lack of extra funds, or also because of the difficultly of traveling with extreme health or behavioral issues that accompany MPS children.
  • Inability or limited ability of a sibling to participate in “regular” kid activities like sports, birthday parties, etc. because of the above issues.
  • The age of unaffected children when the MPS child was diagnosed or significant symptoms or affects began – do they remember life “before the chaos”? Might they be resentful?
  • Different sets of rules for behavior or responsibilities, such as lack of punishment for hitting by a cognitively affected MPS child.
  • And of course there is how much we as parents know about the above issues, and actually how many changes the unaffected siblings actually see or understand. Especially if we as parents refer to the MPS child as the cause or related to the changes or impact, the greater impact it will have on the unaffected children.

Now some of these issues are unavoidable, we cannot give most cognitively impaired MPS children chores or the same discipline.

So, my conclusions or daily guidance that I follow….

  • What can be equalized, equalize (but also teach that fair doesn’t always mean equal).
  • Don’t ever refer to the MPS child as the cause of an issue.
  • Speak and show that difference is okay, whether it is the look, behavior, wheelchair, or other difference of your affected child. Show how to celebrate difference. The Hunter in Focus exhibit and other projects by Positive Exposure are great examples of educating about and celebrating difference.
  • Generally don’t refer to the reason why you can’t do things as being related the MPS child (“We can’t go to the park because Johnny has a doctor’s appointment.” Instead, try “We’ll be able to go to the park tomorrow, just not right now.”), or if you must, talk in terms of the specific reason why (“I know it hurts when Johnny hits you. He can’t understand the same things as you, like hitting being wrong or hurting someone, but I know he loves you.”).
  • Try to designate 1-1 time for each unaffected sibling, maybe even 5 minutes a day and a few hours a week.

Those are the things we’re working on, at least. Please comment with more ideas that have been helpful for your unaffected children.

The longer we live with the diagnosis, the more I understand that it is incredibly difficult for many, even family or close friends, to understand and appreciate the life we live and the choices we face. Of course, that is sometimes the case with any person or family, but because our lives are very different from how anyone expects their family life to be or how many people’s lives actually are, I’ve found that our families are sometimes subject to greater scrutiny or judgment because the differences versus typical families can be quite glaring.

Know, friend, that the empathy of others is often enough, they don’t have to totally understand. But hopefully that empathy will help you support your unaffected children in ways that can make the MPS diagnosis of their sibling a way for them to grow into stronger, more caring, and empathetic young people and adults.

This video is incredibly helpful in considering the challenges of siblings of special needs children.

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