Calling All Parents of Special Needs Children

I'm putting together a new conference presentation on Children With Special Healthcare Needs, and I figured I'd do a little crowdsourcing to get the parents' perspective on EMS care for their children.

Specificially, what I'd like to know is:

  1. What is your child's medical history?
  2. What, in your view, are your biggest concerns for providing EMS care for your child? What do the medics do that you wish they wouldn't? What do you wish they would do that they don't?
  3. What suggestions would you offer for paramedics when interacting with you as parents, and assessing and caring for your child?
  4. For you parents of children that have one of the autism spectrum disorders, or some other neurosensory processing disorder, what special techniques and tips would you suggest for treating your child?

Please chime in with your comments. I think the parents' input can add a lot to my presentation.

  • Teke

    My daughter has Aspergers. Luckily we have not had much interaction with medics. Only 1 trip to the E.R. That we brought her in for when she split her scalp at the pool. My wife the nurse tried to prepare her for the fact that the doc was going to stitch her up. Completely forgot about staples.
    Kids on the spectrum freak about unknowns. Each and every one of them is different. In my daughters case as with many kids on the spectrum telling them what’s going to happen before it happens makes a huge difference. Most will ask a lot of why this why that, humor them and help ease their nerves. In my kids case be honest it may be a scary though having some staple your head is scary knowing how and what actually makes it easier. The biggest thing is a calm even temperament.

    However as my wife said in an EMS situation 99.9% of the time all of that goes out the window because the time is not there.

    • Ambulance_Driver

      There’s time far more often when you think.

      And when there’s not, 99.9% of the time, the patient is too unconscious to fear the unknown.
      Kelly Grayson

  • FMDV55

    I have a son who has grown up with Asperger’s. This brings with it a whole list of challenges. He does not like to be touched by people he does not know and gets very nervous in unfamiliar surroundings. If he needed medical care, the EMS crews should explain in a calm low toned voice everything they are doing as well as why they are doing it. This would help him be more at ease and remain a bit more calm. When the paramedics spoke to me on my son’s condition I would appreciate it if they did not refer to him as “acting a bit strange at first” as sometimes I have heard. Just give me the details of his condition and his status at the time. No need to mention his Asperger’s as it probably had nothing to do with him needing treatment in the 1st place. When treating my son it would also help if the noise level was kept as low as possible and if possible dim the lights in the back of the ambulance. This would not only help him to remain calm, but would allow you as a paramedic to have an easier time treating his injuries. Just little tricks that would make your job easier.

    • Ambulance_Driver

      Perfect, that’s exactly the kind of thing I am looking for!

      Kelly Grayson

  • Skip

    Deaf daughter. Ems may learn basic ASL.

  • Limey

    This little nugget applies to all sorts of children, but particularly the small ones.

    Avoid using the construction “I’m going to take your” be it BP, pulse, etc.

    They fix on the word “take” and if they are literal minded they believe you are going to deprive them of something. This can make them nervous or confused.

    “I would like to measure your” or “may I measure your?” should elicit an “OK” or at least a shy nod.

    {AD being the legendary ‘Childwhisperer’ will know this already, but there might be a few folk that have never heard it before.}

    • kadiera

      This is great – we have a lot of problems with that with our children, and we use the phrase “They want to check your….” – in fact, we talk a lot about checking “numbers” for things like oxygen sats, heart rate, and respiration rate.

  • kadiera

    We have 2 medically fragile/medically complex children – a just turning 2 year old and a just turning 5 year old. My older child is non-verbal, has mild CP, sensory issues, and asthma, plus a history of trach & feeding tube. My younger child has a trach and feeding tube, will likely be diagnosed with asthma and CP at some point, and currently is non-verbal (although for a 2 year old that’s far more normal than not).

    Our only EMS experience thus far involved calling 911 for a trached/vented child with breathing difficulties due to a respiratory infection on top of his other issues, and all things considered, it didn’t go badly after the initial shock when they saw our set-up. We called because what we really needed was transport with more oxygen – we had 8 liters of oxygen running from a tank, and I knew we were going to run it dry just getting to the ER at that point, so we needed help. He was only a year and a half old at the time, but already afraid of strangers, medical settings, and anyone wearing gloves. So to us, it felt like the initial questions were a waste of time, because we knew we knew as much as the crew who came to help us. We ended up being a scoop-and-run sort of deal, once they heard everything we’d tried (I rode in the ambulance; the EMT in the back with us called in and told them we’d done everything they could think of before we called, so they were just going to transport us ASAP and let the ER sort it out….the student doing a ride along asked if I was a doctor).

    Basic ASL would help us – we sign with my oldest. And a willingness to hear parents of complicated kids when they say things like, “don’t explain it, it won’t make it better, just get it over with” – really…we’ve been there and done that, and dragging some things out makes them worse. Ask if you don’t know too – few people have as much experience as we do when it comes to respiratory stuff, given our kids, but we’re happy to explain the ins and outs of trachs and vents and such

    Warn families when you’re going to do something loud – covering their ears can help a lot. And don’t assume a child who doesn’t respond to things you say is ignoring you….sometimes that’s their method of trying to control the situation, sometimes they don’t process what they hear correctly, etc etc etc.

    Keep things really simple whenever possible – and tell kids what’s going to hurt and what’s not. Use phrases like “just touching” “just looking” and so on – kids don’t know what to expect, and when they’re afraid, they assume the worst.

  • Theresa

    My daughter is 4yrs old and has Juvenile Dermatomyositis. I met with paramedics (and their medical director) right after her initial diagnosis, being that we live in such a rural area. Our local Children’s hosp. wanted to educate them, just in case we needed them. Super helpful as none of the medics had even ever heard of her condition before. When they asked me what I needed/wanted, I said, for them to listen to me. My daughter has scary airway issues, if I am calling, it’s because she’s in trouble. It also means that I’ve already tried everything. I don’t need someone to sit there and ask me 1000 questions (just to fill out their forms). Listen to what I/she need(s). Also, like many comments before, be careful of how things are worded. My daughter takes things very literally. She once had a nurse who said “I’m going to steal your BP.” Freaked my daughter out big time. Don’t rush unless you have to. Keep lights down and have a calm/quiet atmosphere (all those ‘beeps’ can be scary). Explain everything to her in terms she understands. Also, use the art of distraction. For example, my daughter has an ipad mini, works wonders. My daughter is also on 7 different medications, and has an entire medical notebook, as well as a medical USB. When the medics first saw this during our meeting, they were floored. My daughter also has a port-a-cath. I need to make darn sure that before it’s accessed, that the medics are trained/know what to do with proficiency. With all the immune suppressants meds my daughter is on, infection/sepsis can kill her in a heartbeat, literally. Infection control is a must. Also, my daughter quits talking/communicating when she’s sick. We use sign language or pictures on her ipad. Just because she may not be able to talk doesn’t mean she can’t hear. Be careful of what (and how) you say. Don’t be arrogant. Also before you leave my house, ask my daughter if there is anything she would like to take with her, like a special blankie or stuffie. Having something familiar to hang on to, can be a huge comfort. Let her have some control over this horribly scary situation she may be in.

  • http://www.facebook.com/bruce.sucec Bruce Sucec

    My son is high functioning autistic. The therapist always told us, “use fewer words”. It takes their brains longer to process all the information, so less is more. Remember that a lot of these kids don’t have a “filter” for sensory input, so whatever you can to “turn down the volume” is good…. Light, sound, smell, touch. Speak softly, and slowly – yes/no questions. Ask the parents for input – are they sensory seeking, or sensory adverse? Light touch can drive some of them up the wall, so firm touch may be necessary, but you have to find out which it is. Each of these kids is different. We used to keep a “fidget bag” in our car with various toys to keep him distracted. He stuck everything in his mouth, especially things that vibrate, so an electric toothbrush was in there, along with koosh balls, squeeze toys (he was sensory-seeking). An iPad has been a life-saver. Some kids are non-verbal, and they can communicate via pictograms on the iPad. Also lots of apps to keep them distracted. Also, they can be very literal, as other people have mentioned.

  • http://www.facebook.com/bruce.sucec Bruce Sucec

    My son is high functioning autistic. The therapist always told us, “use fewer words”. It takes their brains longer to process all the information, so less is more. Remember that a lot of these kids don’t have a “filter” for sensory input, so whatever you can to “turn down the volume” is good…. Light, sound, smell, touch. Speak softly, and slowly – yes/no questions. Ask the parents for input – are they sensory seeking, or sensory adverse? Light touch can drive some of them up the wall, so firm touch may be necessary, but you have to find out which it is. Each of these kids is different. We used to keep a “fidget bag” in our car with various toys to keep him distracted. He stuck everything in his mouth, especially things that vibrate, so an electric toothbrush was in there, along with koosh balls, squeeze toys (he was sensory-seeking). An iPad has been a life-saver. Some kids are non-verbal, and they can communicate via pictograms on the iPad. Also lots of apps to keep them distracted. Also, they can be very literal, as other people have mentioned.

  • Rachel

    Have a child with high functioning autism, and is profoundly deaf on one side. Both mom and dad have EMS experience. I think a lot of people touched on it below, but I’d like to echo the concepts.

    so often in order to comfort a child we try to “relate” to them, show them cute or cuddly stuffed animals, talk in loud peppy voices, hit them with a lot of questions to distract them. It does work for the neurotypical child but it’s basically hell on earth for my kid because he doesn’t like strangers talking to him unless he’s had a chance to decide if he can trust them or not. Reading their cues is hard- sometimes they are subtle (are they turning and not engaging, are they breathing heavy, are they trying to chew something) but a few key points:

    I always speak to them first about needing to perform any tasks (again avoiding the “take your….pulse/BP/etc” words), and I let them know I’m going to ask mom/dad/caregiver a few questions, and they can chime in with answers if they like. My son doesn’t always figure out that he CAN say something, so he needs direct instructions letting him know that we do want to hear from him. If they seem like they don’t like the words coming at them, using a low voice to talk to mom/dad/caregiver gives the patient a few minutes to calm themselves.

    As a parent I need to advocate for him constantly, and sometimes parents are afraid to do that (especially those who might be struggling with language or fear of the uniforms). so advice b) ask specific questions of the parents. They may be too nervous to tell you that you need to turn the lights down, or that you need to use pressure or speak slowly to give them time to process the question. try to come up with the most specific questions you can in the scenario to help the parents start the conversation (“do you think they would prefer the lights off?”

    c) when dealing with kiddos like mine with autism, you’re putting someone who doesn’t like change of routines or transitions in a boxed up room that isn’t part of their routine and is full of transitions (get in, drive, get out, go somewhere new). i start by telling them everything, from “that sound is the wheels locking into the track” to “when we turn the corner, you’ll feel like you’re sliding on the stretcher, but with your seat belt on, you won’t fall” . If i find that’s helpful (ie, they calm a bit- if it stresses them out to hear so many words, i stop), I keep going with every single detail I can think of like “when we get to the hospital, there will be some noise and some light, and some nurses and doctors are going to ask the same questions so we can all be sure the best way to help you feel better” OR i do a social story on the fly. I pull out my phone, find a picture of the hospital, and show them what it looks like so they know what to expect.

  • Livsmom

    I have a 15 month old daughter who has Congenital Hypothyroidism and is physically and developmentally delayed. She is currently averaging at a 10 month old level and has been in physical and developmental therapy since she was a month old. They’re also checking her for Aspergers, however, i’m not so sure she has it. With her specifically, you couldn’t tell she has problems by looking at her except she wears ankle braces and is now going to be wearing a hip brace. She interacts with others well, but is like any other child and is shy at first. She doesn’t adapt to change very well, initially, but after reassuring her she does fine. The things we do with her is every day life for us and it doesn’t seem out of context anymore or difficult. As long as the crew gets down to her level and interact slowly / calmly and at her pace, shes typically okay. She will most likely not go to anyone else, so its always best to allow her to be with her dad or I, especially what would be a ‘scary’ situation for her. Her Dad is a paramedic and I am an EMT, so having been in the medical field prior to having or daughter has given us some outlook on how to be with her–and now that we have had her, it makes it much easier, for me at least, to know how to deal with children with special needs.
    The most important part is: get down to the childs level, speak slow and calm, & go at their pace..let them interact as much as possible, even if its playing with your stethescope. & always allow them to have their ‘security’ with them (i.e. blankey, binky, or stuffed animal).

  • Carolyn R.

    AD – this is great. My boy is adhd. He seems pretty neurotypical but his social cues are off so he buttons down so as not to make a mistake. He’s also oppositional and knows it. When in an emergency we do the usual “this will happen…. Never “do you want to….” He’s 12 so things are getting better.

    Also, when dealing with boys particularly, I have found the phrase “you are so brave” to be almost magic. Even when they’re screaming their heads off it does help.

  • Nik

    I’m a nurse by training, though I don’t work in a clinical setting. My wife is currently hospitalized though, and some interactions with nurses and physicians there prompted one thought that may be relevant to your topic:

    EMS providers should be aware that the parents are likely to be the experts not only on their kids disease, but on their kids in total — personalities, reactions to procedures, responses to certain medications. Listen to them and take their suggestions seriously — whether its to start gently with meds, or to explain procedures, or to pay attention if they tell you that something “really is very wrong, out of all proportion to the current appearance of that particular child.”

  • Anon

    This is something that might be helpful for parents to do to help medics. A friend did this, but thankfully hasn’t needed it. She created a box of supplies and info for each of her kids. In each were meds for each kid, like seizure meds and extra inhalers, in case she needed them. Both boxes had an “about me” page. It lists all their medical info, like diagnoses, meds, doctors names and numbers, etc. it also described their normal behavior, such as nonverbal, doesn’t make eye contact. Basically, the mom wanted medics to know everything they needed to know if she wasn’t there. Box was kept in an easily accessible area where she, or somebody else, could get it quickly.

  • Therese

    Hard of Hearing, or deaf depending on whether or not he’s wearing his cochlear implant is the category my 6 yr old son would fall under. I understand not many people know ASL, but my son can lip read so many people don’t even realize he’s HoH. The problems comes when he’s being shy, people are asking questions and he’s simply nodding to avoid confusion. The solution is to speak in a normal tone, no over emphasizing, and looking directly at him. Make sure he’s looking at you when speaking, because he might nod yes but is distracted by whatever else is going on in the rig.
    And Smile. That goes a long way. He reads body language more than anything. If you’re hesitant and uncomfortable, he’ll probably mirror that.
    That being said, I work as a paramedic and he spends lots of time at the garage or in classes with me. He’s more comfortable in the back of a rig than most of our new hires. I know it’s only a matter of time before he’s taking a real ride, so I want him to be comfortable back there. I strongly encourage friends and his classmates to stop at the garage and tour the ambulances, because it’s the unknown that really frightens them.

  • TXEMTHH

    I have a son, 14 y/o (although the size of a grown man at 6’1″ and 240#) who was Dx with Autism at the age of 2. He is high functioning but socially/emotionally awkward. The biggest issue we experience with him are the loud noises (I would suggest not raising your voice when speaking to him, he will get upset to the point of crying most times). He has a genius IQ and if he has read about it or seen it he can repeat it, he loves to learn so another suggestion would be to get him involved if possible, explaining what you are doing and possibly asking for his help (ie: allowing him to hold and slip his finger into SpO2 probe). If he is upset to the point of crying, it is now time to speak calmly, clearly and explain what is happening, one thing at a time. If you cannot get control at this point it may get to where he does get out of control and angry, then we have trouble as he is not easy to restrain and get back from that state.
    It’s pretty simple, treat him well, talk to him (not at him) and be compassionate. These are things we should do for all Pt’s, special needs or not.

  • JDal

    my son has Aspergers and the biggest thing I can think of to keep him calm is to not push Mom/Dad out of the way or to at least keep them in the child’s sight if you can. And listen to the parent input, or ask them, they know the kid best so don’t assume they can’t help you. My son calms down a lot if he can see or hold mom’s hand when he is upset. . . it is a lifeline for him.

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Kelly Grayson

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