Tag Archives: specialneeds

Introducing Benjamin

Introducing Ben to new people isn’t something we do as often as we used to; we have great family connections and have surrounded ourselves by the same people for most of the past nine years.

As I transitioned into a new job this year, it has been interesting and slightly funny (for me!) to try and explain Ben’s diagnosis without it sounding as dire as it maybe is.

Ben is an anomaly; he is one of a kind. There are still only a handful of people officially diagnosed with his type of PCH and when I create that visual for a new acquaintance, I don’t think they always know how to react.

I just want to clarify – it’s not sad for us. We are no longer sad or upset by his diagnosis.  We have sad moments and stressful times but we have mourned the son we thought we were going to have and now celebrate the amazing person Ben is.  That ship is so far gone for us; Ben is exactly who is meant to be and we’re okay with that.  So you can be too.

New people in my life have expressed sympathy over our “situation” – what situation? I appreciate your sympathy but really don’t need it (not meaning to be harsh, but this is our everyday… it’s just reality).  And I definitely don’t need your pity so don’t even go there.

What I do need is for you not to judge me when I come to work with a big mess of drool on my shoulder or if I wear the same thing for five days straight because my priorities don’t often include my wardrobe.

Explaining Ben to new people actually makes me feel bad because I know how it sounds.  It sounds tragic and terminal and unfortunate.  I have heard myself say several times “It’s really okay” or “It’s not as bad as it sounds or looks on paper.”

I do sincerely appreciate those who express curiosity or want to know more about him; I’m happy to answer your questions and share his life with anyone who wants to be a part of it. I can talk about Ben for hours if you want.

For some people, I believe that it is difficult to imagine that kids like him exist. But he does.  And there are other kids with rare conditions whose stories are similar; some of those stories are happy ones and some are sadder or shorter.  We are the lucky ones…

We are lucky to have a very happy, mostly easy going child, who considering the adversity and challenges he faces daily, soars through his life smiling and laughing and smiling and laughing… and sometimes biting.


Bloggin’ for Benjamin

Back to the Being Benjamin Blog.

It is easier to keep people updated on the life of Ben through Facebook but while it is nice to see who reads it and the likes and comments, I feel it doesn’t have the same sharing power as when I sit down and write it out on WordPress. I will make sure that Being Benjamin’s Blogs show up on his page so that everyone who wants to read about him can including those who had previously subscribed here.

Blog to come on the fears and worries in December for this Mama.

A Defensive Parent

As we’re sitting in Kindergarten Information Night and the teacher is talking the group through what to expect over the year for our children, special needs children comes up in the conversation.

A parent, near the back of the room asks “special needs kids in the classroom?  what do you think about that?”  The teacher looked surprised at the question (instantly winning points with me) and answers something along the lines of “it’s fine” and “a past child with Cerebral Palsy did quite well” BUT my defenses were already up.

First of all…. children with disabilities are not “special needs kids” – they are kids that require extra support and attention; all our kids are special and their needs are unique to them.  I prefer “Child/Parent Led Education” or “Inclusive Education”.  I understand that the term special needs is widely used and accepted but when it comes to education, I feel like it immediately isolates children into categories.

What does get my defenses up is the tone of which the question was asked “about that?”  

ABOUT WHAT?  About a child with equal entitlement to an education?  To a child capable of achieving goals and meeting challenges in their own way (no different than any other typical kid)?  About an inclusive community and educational system?  Inclusion benefits everyone, especially at the Kindergarten age.  It provides the opportunity to learn about acceptance, and kindness, and understanding differences.

I wanted to shout it out and inform each parent there what the benefits of an inclusive classroom can provide but…… my husband put his arm out.  Stopped me from finding out exactly which mom asked the question in that tone and suggested that maybe she didn’t mean it the way it came out.  She did mean it that way but I understood what he was saying.  I don’t have to pick every battle.  I didn’t need to fight this battle, especially considering we were there for Poppy, not Ben.

The thing is… parents of children with disabilities have to fight for everything.  It becomes instinct and second nature and speeches no longer need to be prepared because you have your advocacy points memorized.  I feel like a huge part of my job as Ben’s parent is to educate and be the voice that he doesn’t have; I say this all the time but not everyone is going to want to hear what I have to say and I have to consider place and time.

So while I kept my mouth shut this time (but admittedly, had to excuse myself from the room to take deep breath), rest assured that come September, I will find a way for Poppy and I to show her classmates how important inclusion is and what it means for her to have a big brother with “special needs”.