Dear Plebotomists and nurses….

We had labs drawn today. Every time we do I see a problem that is facing most of us with older children who might be either on the spectrum, developmentally delayed or have sensory issues that interfere with their response to medical and dental treatment. (trust me, sensory kids are terrible when it comes to dental or medical things and you can’t really blame the. They feel everything a hundreds times more than we do)

For my child blood work is rough. It elicits nightmares days before it is going to be done. Unfortunately this all comes from a bad experience in a hospital ER when my son was young. I’ve been told by some lab techs that they hear this story all too often and it doesn’t have to happen with the right training to work with children. I agree because it’s left him with a life long fear of needles.

I do tell each tech ahead of time that my son has anxiety with blood draws. Sometimes they listen to me and sometimes like the least time, they say stupid things like “you’re a big boy, there isn’t any need for this” while my child is hyperventilating. Then I must step in and talk to him and calm him down.  Anxiety is anxiety folks regardless of how “big” one is, otherwise adults wouldn’t get it. Once you have been traumatized by something….fear is a normal expectation.

So what I wish to convey to those in the this field or the medical community is not to judge what a person can handle based on their size or age. Don’t assume. I’m there with him for a good reason during this process. He might look like he’s nearly an adult, but that doesn’t mean he doesn’t have a valid terrifying fear about the experience.

Thankfully, I can get him through blood draws but you must let me do that because I know him better than you do. I know what works. I  talk to him and distract him with an in-depth conversation about something he has an interest in. Distraction is your friend on this one!

What does help:

  • Distractions! Please talk about anything but needles and blood work
  • Make it a point NOT to show him all tubes and the needle unless he asks
  • Please go step by step verbally and tell him what you are doing before you do it and leave out terror words like “poke”, “stab”, “pain”
  • Keep the tourniquet on the LEAST amount of time you have too, this is a very disturbing pain sensation for sensory kids. He says it’s worse than the needle stick.
  • Use a butterfly needle, it hurts less because it’s not moving around when you change tubes.
  • Please don’t assume or judge when a 14-year-old (or older) needs mom in the room. Trust me, you want me there. I know how to calm him down.

None of our jobs are easy and it is hard for medical personnel to know our kids have these issues when they might otherwise look “OK” until they are in the blood draw chair.  Labs could help by keeping their ped specialized techs in the same locations instead of rotating techs. A trust of sorts get build when you have the same lab tech each time. You know what to expect!

We’ve had some great and very patient labs techs, but we don’t always get the same one. This time was not the best experience for him because he had a different tech and she put the tourniquet on and then says “I’ll be right back” and runs out of the room. Then I’m left with a panicking child that is losing control because it’s hurting a LOT.  Then he’s all worked up and we haven’t even done the puncture yet or collected the blood.

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Playing with Autism

One thing we always want as parents of ASD children is for them to have friends. We long for the day they will have play-dates, run around in the sun with other children and just be kids.

Despite this wish, every time we have a play-date  I find myself anxious instead of excited. I worry about how he will do at someone’s home. Will he have a bout of weakness and the parent won’t know to give him his snack? Will he reach sensory over load? What if he gets hungry and doesn’t tell anyone?  Will he remember his manners?  Will the children fight or disagree? Will he recognize he’s had too much sun before he burns?

So many things that never crossed my mind when my NT child went to play at a friend’s house. I knew she could advocate for herself and navigate fine without me. I do not have that sense of comfort with my ASD child.

I dropped him off at a school friends house 20 minutes ago and since them all I feel is a heightened sense of anxiety. I never understand exactly why these thoughts go through my head and I worry he’s not alright. Other than as a parent of a child who has suffered damage or had an illness, medical condition or any affliction that makes them more dependent, you worry.

And it’s not until you pick them up and see they are fine, that the anxiety stops. There are so many things parents of ASD kids have to consider when their child goes to play. There may be food restrictions to observe or medications or medical concerns like seizures.  You don’t want the other parent to see your child as a burden that’s coming over, or you as a neurotic mom. But yet these are things that have to be discussed before the play-date.  So in addition to what time to come over, it’s what can’t he have to eat? Is he allergic to anything? Does he prefer not to be touched or get wet?

I often avoid play-dates and until now I didn’t realize fully why. He hasn’t been on a drop off play-date in 2 years. I am usually there or the child comes to our home. This time he is there without me. I have identified my fears so I can move past them and let him to be child.

This way I can let him to go play even with autism.