Posted in Random nothings, Sensory play

Sensory Processing Disorder – what not to tell a mom

SPD

The last few days I had to deal with a few people that just do not ‘get’ SPD. They straight out tell me that my child is just spoiled. Oh I wish this was the case, but SPD is not about your child being spoiled or naughty. They have no control over their reaction to certain things. Abby can only eat certain foods and to be honest, I don’t even know  exactly what that would be, seeing that one day she will eat something and the next day, not. The therapist said to me yesterday that she is fascinated by Abby, as there is no specific trigger. We know when a trigger has been hit and we know that we can somewhat manage it to prevent a total melt down (sometimes). But what the trigger is, just not something we can pin point. It just seems that ‘everything becomes too much’ and her system then shuts down. She has a meltdown to a point that she pukes, then turns blue and passes out. When she comes too, she falls in my arms and sleeps it off. The first time this happened I got the fright of my life. Now we know the drill and we manage it as much as possible.

So for a mom handling this type of situation, telling her that her child is just spoiled, really gets to you. Yes my whole life revolves around her schedule. If her routine is out with 5 minutes we will have chaos. Yes we do plan our whole day around her and I will not go out if it is a nap time, no matter how much I want to go have coffee with a friend. She seems perfectly fine being out, but getting home is a total different situation. As soon as I get home with her, she falls apart. It has just been ‘too much’.

Eating is a huge issue at the moment and we do give her therapy for it. But she only wants to eat a certain make of pureed food. And for some reason they are sold out everywhere – making me very desperate as she would be so hungry she would cry the whole day, but just can’t eat anything else, even if she wanted to. So walking from shop to shop and asking assistants if they might know when stock is coming in, has been my duty this whole week. At one shop I asked the assistant and she told me they don’t know when they will get stock (this is this shop’s own brand – they MAKE it), but I must check Clicks. Telling her, but this make is a house brand she looked very surprised, but that being left there… She then continues to tell me to rather use the products they have on the shelves. I say to her that it is not possible, my baby won’t have it. She then mentions the next product. I answer the same thing – My baby won’t eat it. Feeling desperate enough to now have a full conversation with the assistant I explain to her that my child has SPD and that she can only eat certain things and even if she is hungry, she won’t eat something else. The assistant’s reply: “Oh then there is something wrong with her – take her to a doctor.” I took a deep breath and told her, thanks, but she has been to a few doctors, that is why we know what  the problem is, so if she could please just check when they will have stock. She just replied again: We don’t have stock, take your child to a doctor there is a fault with her..

I left, feeling so frustrated and upset. People do not understand this disorder. I am not even angry at the assistant. She has never had to deal with it, she just don’t know… But how do we start to educate people. More and more children do have this disorder (blame has been given to vaccines, pesticides, hormones in our meat, GMO’s etc). I am trying to do my part but it just feels like it is being made of as ‘Oh she will get over it’. No she won’t. She will learn how to manage it, I will teach her how to control her emotions (to a point), but she won’t “GET OVER IT”…

Education is so important, but above all, just some support. “TRY” to understand even if it does make no sense to you at all. I promise my child is not being difficult just because she wants her way. She is trying to eat other food, she is trying to hold her bottle (nope, still not happening) and the therapist is so impressed by her willingness to try, but she has no control over it. So when you see me in the shops looking like death warmed up, just smile and wave, this will get better, as soon as I find that damn food…

 

Advertisements

Author:

Owner of Geek World South Africa. Owner of Tipanga Photography.

2 thoughts on “Sensory Processing Disorder – what not to tell a mom

  1. Yes, many don’t understand SPD and how challenging it is for a parent to keep it all together when their child falls apart because the world around them is too much to process. My son lives on cereal most days 😊.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s