advocacy · siblings · Uncategorized

I See You Too, Sibling

Dear Sibling of a Child with Special Needs,

I like to see the bright side of things, and that means for you too.  When you say you’re more resilient than your friends, I think “Yeah, that’s right, that’s from all the crap you’ve been through!”

Then I think about it.  Man, you have been through some serious crap.  Of course you’re resilient, resilience is a matter of survival.  You’re more empathetic and certainly more accepting of people from every possible background, but of late, I’ve been wondering about the cost.  You had no say in this, we’re just the family you wound up in, but I want you to know that we see your struggles.

When people at your school use the word “retard” and don’t understand why it bugs you, we see you.

When you feel like we don’t have the time or energy for you or your problems, we see you.

When your friends have no idea what your family or Down syndrome or autism or cancer are like, we see you.

When we miss your school events because there isn’t enough of us to go around, we see you.

When you feel like all of our hopes and dreams for a typical child are your responsibility to fulfill, we see you.

When your siblings meltdown in public and it feels like there’s a giant spotlight on our family and the whole world is watching, we see you.

When you’re shoved to the back burner, even on your own special occasions, because their needs are constantly pressing, we see you.

When every single holiday and special occasion has to be planned around them instead of you, we see you.

When emergencies happen and we expect you to take on adult responsibilities at a moment’s notice, we see you.

When you’re bummed that we don’t want to go out to do “normal” things as a family because it’s just too much effort, we see you.

When I’m busy on the phone and email day after day and it seems like I’m a full time case manager instead of a mom, we see you.

And I want you to know how much I admire you when you rise to the occasion, which you so often do.  You are resilient, and that makes me so very proud.  And I want you to know that when you feel sullen and frustrated and invisible, that I get it, (even if I get frustrated back).  I want you to know how valuable and wonderful and beautiful you are.  I want you to know that you matter, even though I’m often too frazzled to show it.  I want you to know that I see you and hear you and love you.  I wish I showed it more and I wish I showed it better.


advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.