Our story, our journey.....

I made a video of what a typical, non-school day looks like for Jacques. Enjoy!

This is gonna sound really strange, but sometimes I almost envy people in "normal abusive relationships". They have the luxury of hating their abuser. Of maybe finally getting out of the relationship. They get sympathy and maybe finally get to escape their circumstances. Parents of certain special needs kids never have that luxury. Sure you can be pushed into placing him/her in a home, to make them the problem of the state, or to have them live with relatives for a while. But, you never escape the sense of responsibility. Or the pull of a parents love. That love that would move mountains for someone. That kind of love that may eventually become your undoing. (Un)?fortunately, special needs parents are made of really strong stuff. They learn to focus on the small victories. On the happy times, the times your heart feels like it might burst out of your chest with love for that child. You focus on the effect that child has on everyone he comes in contact with. The immense p...

My last few posts have been on serious topics. I think it's time for some lighter reading. I herewith present: Weird / crazy things we say or do almost daily on our special needs journey.  1. "Are you high?" - this is something most, if not all, type 1 diabetic parents must have said to their type 1 at some point. When Jacques' blood glucose is high he gets very thirsty, after his second glass we usually start to consider a high blood glucose. You can imagine the looks we have received when strangers overhear us talking about our 14 year old disabled son being high.  2. "Where are your pants, and your shirt, why are you naked?!" Boy oh boy, we ask these questions at least once a day. Jacques loves stripping, if his pants or shirt are slightly wet, he will strip, without any shame, where he is, in front of everybody. As you can imagine there has been quite a few embarrassing moments over the years.  3. "No, don't, stop!...

When does helicopter parenting become something more in special needs parenting? Photo by Alex Kremer from Pexels Helicopter parenting is described as follows (according to Wikipedia) : A helicopter parent is a parent who pays extremely close attention to a child's or children's experiences and problems, particularly at educational institutions. Helicopter parents are so named because, like helicopters, they "hover overhead", overseeing every aspect of their child's life constantly. Sound familiar, special needs parents? I think every single special needs family can be described as being like this at sometime or another. With the meltdowns so common in autism, we have to be aware of everything that could trigger one. But what if this phenomenon becomes something more? What if you can't seem to relax even when there is nothing around to trigger a meltdown. What if you can't seem to switch of your fight or flight response, even when safely at hom...

Jacques and I have a special connection through music. It is hard to explain. He loves when I play songs for him on the piano. He will sit next to me and then I have to play. He will sit still the entire time I play (usually around 45 minutes), and this kid cannot sit still for more than 5 minutes usually. He switches couches while watching tv... But something strange happens when I play, it is like we can communicate more effectively through the feelings the songs awake in us. I can feel when a song has made him sad, I feel it while playing. It has happened once or twice that I even stopped playing that song and went to another because I instinctively know if I finish he will be to emotional and will start to cry. I know which songs he absolutely loves so I keep them for times a song has touched him deeply. I immediately go to one of his favorites and play that. Another strange thing he does, he gives some of the songs names. When I play a specific song, he will say oupa Dan...

The third angel I had the privilege of knowing has passed away. And my heart breaks for all of the parents of the kids taken away so young. This is a pain I am not yet familiar with, but it is the pain I know that will hurt the most. This is the pain many special needs family's fear more than any diagnosis or treatment. The pain of saying goodbye to the person who formed you more than anything or anyone else ever could. And this special person formed the whole family dynamic. Everything revolved around their care. Vacations were planned around their needs. Their parents were absent for a lot of their siblings life. I fear for the time, just after the loved one will be taken, what will the sibling/s feel? How will they react? How will we react? I know there will be sadness, but what other emotions will be lurking around? Anger? Resentment? Maybe even a sense of relief? How will we deal with that? I think it's important to start dealing with these emotions wh...