Rare Chromosome Disorder Awareness Week is almost here!

Hi everyone –

It is almost here! Rare Chromosome Disorder Awareness Week (RCDAW) begins June 2nd!

Many CDO members are organizing special events this week. We would love to know what you have planned too.   Let us know and we will post to our Facebook pages.

Would you like RCDAW flyers to help spread the word and increase awareness in your neighborhood, town or city?   These can even be personalized to include your favorite photo.   Please e-mail Kelly Paulson – kelly.paulson@chromodisorder.org for the flyer and instructions on how to add your child’s photo.

There is one super easy way to increase awareness this week – just visit our website – www.chromodisorder.org – and download the RCDAW logo and add it to your personal websites and blogs.  We even have the logo available in different languages!

Beautiful CDO awareness t-shirts are also now available – we are offering three different designs along with many other items through our www.zazzle.com/cdo_inc online store.

And in honor of Rare Chromosome Disorder Awareness Week, CDO is giving away free RCDA bookmarks to our members. Please simply send a stamped self-addressed envelope to the address shown below to receive your free glossy bookmark.

Individually each of these chromosome changes is still considered rare. But we are gradually now learning these disorders actually may not be as rare as once believed. Please support Chromosome Disorder Outreach Inc., RCDAW, and our goals of increasing research, education and understanding. Together we are a strong force.

Chromosome Disorder Outreach Inc. P.O. Box 724 Boca Raton FL  33429-0724

Take 5 Minutes and Recharge

At night, I’m generally pretty exhausted, but it’s not always easy for me to sleep. I lay there trying to think through all the ways my two girls could get hurt, how I could respond to each of these situations, and whether I would even be able to help them. Most of these scenarios are somehow related to their disabilities, so there may only be only a certain number of things that I can do within the realm of possibility for them. The one that keeps me up most frequently is the fear that they will fall down the stairs. You may not have the same worries as me, but you may resonate more with the fears that other moms have expressed to me:

 

  • Will my child ever make friends or fit into a group?
  • At what point will my child realize her or she is “different “?
  • Will I always be able to care for my child?
  • What if I see a medical issue but the medical professionals won’t or can’t do anything?
  • What if the disease progresses to a point that his or her body starts shutting down?
  • What will he or she do without me?

 

Lots of things to worry about, only so much time to think about that AND everything else. That can be exhausting without bringing in the day-to-day routines of actual caring for your child.

Well-meaning people (and magazines) who may not understand try to give helpful advice to help decrease our stress level. “Get some exercise,” “Meditate when you wake up,” “Grab 5 minutes by yourself to recharge,” “Go out on a date night.” This is generally great advice, but easy platitudes like this aren’t useful by themselves because they don’t address the obstacles that keep us from taking advantage of that advice. We don’t exercise because of our exhaustion. We would meditate if we could remember, which we can’t do because we’re so tired. And you’re joking if you think 5 minutes is going to help us feel better. If we could get about 3 days of just laying in bed, that may begin to help, but we also wouldn’t be able to because to be able to get away guilt-free because do you know how hard it is to get a babysitter for a couple of hours, never mind a couple of days? (Breathe!)

Every parent has their own set of worries. This is not a political piece on how our lives are so much harder than those with typical children. Instead, I want this to be a discussion on our levels of stress, and our lack of self-care. Since our kids need a bit more attention, and for longer periods, we have to figure out how to take care of ourselves somehow. We need a plan for support.

We may not be able to get a day at the spa, or even a full day at home to get stuff done, but we can take steps to help ourselves and our families. What government or community supports do you have access to? Respite? Social work? Family or friends? Start making a list of these just to be able to reference. Also, because our families tend to be high needs, it may not always be about getting a break. It may be more about making the everyday routine run smoother. Can you get groceries delivered? Can you afford an occasional cleaning lady? What about freezing dinners for those extra hectic nights? Sometimes, it may be as simple as taking a step back and remembering that these are our children. We take on so many roles (parent, therapist, body guard, nutritionist, teacher, etc.) that sometimes we need to relax, forget those roles, and just play with our child. Those are the memories that they will remember.

I don’t want to bring you down with this article. I do want to leave you with some hope. And here is that hope: as much as you worry, and go through your hard times, you are not alone. We all have, at minimum, this group. Please use us as a place of support. Some of us are lucky enough to also have family close by or the financial support of local agencies for respite or nursing services, and hopefully some of us have good relationships with our children’s therapist(s). And there are those who are just beginning our journey into the world of special needs parenting. To the new families, I urge you to start doing your research now so that you have the support system in place when you need it. Because you will, and that’s OK.

Submitted by Jacqueline Bair

 

The Mom Identity

I was talking with a friend yesterday morning and we were discussing how we almost can’t remember who we were before we were moms.  It seems like so much of our identity has been lost to the needs of our very young children.  And for me, this goes a step further.  I am not just a mom; I am a mom of a child with special needs.  Sometimes, it seems that 99% of my time, my thoughts, and my efforts go toward my children.  Semmes, my typical 13-month-old is in the throes of separation anxiety; not even my husband can make him happy much of the time.  He needs his mommy ALL THE TIME.  I know that this is a short season of his life and in some ways it does make me pretty happy, especially when he sees me across the room, throws his hands up in the air, and moves as fast as his little legs will let him go toward me (I would say run, but that would esteem the movement). I am conflicted with my emotions, to say the least. And with Cooper, my 3-year-old with special needs, it seems like there is always a doctor’s appointment, or a medicine to give, or his oxygen levels need to be monitored, or he’s crying for absolutely no reason, or he’s overwhelmed and needs to go off by himself and lay down.  You know, things that normally aren’t on the mind of a mom of a three and half-year-old. In many ways, being a mom will always be a big part of my identity.  Obviously.  But as my children get older and need me less and go off to school and become their own little selves, I will be less needed and will less identify that way.  Except for Cooper, who at three is the developmental equivalent of a 9-month-old, who will never be potty trained, who is tube fed. I will always be needed with Cooper.  And I will always be a mom of a special needs child as much as I am right now. And some days, this is a hard, daunting reality to face. And some days, I wouldn’t change it for the world. At book club last night, we were talking about how strange it is for us to realize that our parents were PEOPLE before they were parents.  They had relationships, opinions, lives.  And I think it takes having a child of your own to really realize that.  Because you know that you were a person before you were a mom and you know that being a mom isn’t 100% of you.  But when your children are young, it’s hard to remember that.  Some days it’s all I can do to keep my head above water. I’ve realized how important mom relationships are. Finding people who are supportive, who go on playdates, who sit with your special needs child while you change your typical child. I’ve become more choosy, but this choosiness has made the relationships with my friends more substantial. Sometimes, they’re the only way I get through a day and sometimes I’m the only reason they do. submitted by Crady Schneider