Global Webinar Series - Winter 2019 Recap | Global Down Syndrome Foundation

Global Webinar Series – Winter 2019 Recap

WINTER 2019

CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment


What You Need to Know


Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

A step-by-step plan for increasing use of medical equipment

Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

Overview: Click to Listen


Powerpoint Presentation: Click to Download


Additional Handout: Click to Download


Questions & Answers:

Gail, a member of the Down Syndrome Association of Delaware:

1. How do you get your child with DS and Autism to wear glasses for more than 4 seconds?

This is a difficult question, as sensory issues are particularly challenging for children who are dually diagnosed. Is there a time of day that your child is particularly calm? Maybe when eating or in the bathtub? Without knowing specifically what your child’s level of understanding is, I would also consider using a visual timer (try the Countdown timer) to teach your child that the glasses will come of in 4 seconds to start, then maybe 7 seconds, and then increase from there. Since the visual timer looks the same, even when the time is increased, perhaps that may help your child learn how long before practice is done.

2. How do you get your child to not pull out their g-tube, pull out their hearing aids, and throw their glasses when they have severe sensory issues?

I believe that children with sensory issues get so overwhelmed and focused on the distress they are experiencing that they try to escape from the situation that is distressing. The best advice I can give is to start with desensitization to one of the pieces of equipment that you are referring to. It makes most sense that you start with the g-tube. You may need to do a combination of denying access to your child’s g-tube and at the same time keeping your child’s hands busy at all times. I’m not sure how old your child is, but some families have used a wrap over the g-tube site or placed their child in something like a onsie or a leotard to reduce access.

3. Can you give me tips on how to operate as a more normal family in a public setting while tending to all these medical needs?

I can imagine the distress that your family must experience with a very medically complex child. I feel like your question may require further discussion about what specifically feels the most distressing. Then, I would work on that part first. Is your child a picky eater? Is it difficult to go out to restaurants together? Is it more related to something else? Please reach out to discuss further.

Lexy, a parent from Verona, WI:

1. CPAP mask! He can take it off himself in the night. And he has nothing that is a high enough motivator. Help!

The first thing that I would think about is whether he is taking the mask off intentionally or without awareness. If it is intentionally, there are two options. First, some parents will sleep with their child at first to replace the mask each time it is taken off. This is obviously stressful for the family and you would then need to work on fading yourself out of his bedroom again once your child learns that taking the mask off is not an option. If you think that your child is taking it off without realizing it (meaning in his sleep), then I would work with your CPAP team to see if your child needs a different mask, if you can use a sweatshirt to fish the tubing through to reduce the chance that it moves around and then your child takes it off.

2. Any tips for helping him wear a watch?

If your child has sensory issues around wearing a watch, I would start with having your child wear the watch during an activity where he is most distracted. The distraction can help reduce the focus on the feeling, resulting in him getting used to it. You can also use a visual timer to help him know just how long he has to wear it before he gets to take it off. Gradually increasing the time on the visual timer will help him get used to the feeling to the point where he no longer feels the need to take it off or isn’t bothered by it. You can use duct tape to secure the band too so that he can’t take it off for the short time that you are having him practice wearing it.

Christina, a parent in Kearney, NE:

1. My son chews on his glasses and has broken 2 pairs. What do I do?

I would consider speaking to an OT that specializes in sensory issues. They may be able to suggest other ways for your child to get oral input so that glasses aren’t used to get that input. Chewelry can be a great tool to consider using. Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

2. My son also hides his glasses, we’ve lost 3 pairs. What should we do?

Kids can be so creative in how they “get rid of” glasses. I would review what are the highest risk times that he hides them (When in the car? When transitioning from one place to another? When playing alone in a room?). During those times, start out with full level supervision. Teach your child through routine that they can place their glasses in a case or give them to you if they need a break. That way, even if they “get rid of them” or don’t want to wear them for the time being, they can have control over asking for a break, rather than just getting rid of them.

Jenny, a self-advocate in Boise, ID:

1. If you fall asleep each night with your CPAP mask on, how can you increase the length of time you use it? The fit and pressure are adjusted so that’s not the problem. We’ve been using the mask nightly for 2 years but can’t get usage beyond a couple of hours.

I hate to suggest this, especially without knowing how old your child is, but many of our families will sleep in the room with their child so that they can replace the mask. The more practice your child has at night wearing it, the less likely they will take it off because they are used to the feel. I would suggest making sure that you are not laying in the bed, but maybe next to.

Sandra, a parent in Mission Viejo, CA:

1. My son has a BAHA that attaches magnetically behind his ear. He has so much anxiety when he wears it—but he can’t explain why. What insights do you have on if it’s a sensory feeling of the bone conduction or if it’s because he’s hearing more than he normally does.

Without being able to ask more questions about what behaviors your child exhibits when the BAHA is one, I would guess that it is probably because of the new sounds heard. To manage anxiety, be clear about how long your child has to wear the BAHA during the practice session. Then, when you see that your child looks startled or upset, label what sound your child may have heard. For example, you might say “Oh, it was loud when I closed the door, huh?” Remain calm as you label what you think your child heard.

Kristen, a parent in Laramie, WY:

1. How to get a cpap mask on a toddler without head thrashing

Have you tried modeling putting the CPAP on a doll or on yourself. Whether you put it on yourself or a doll, sing a song your child is familiar with. When the song is done, take off the mask. Then say “Your turn”. Your child knowing that practice is only for a certain amount of time can help reduce head thrashing.

2. Reward system ideas for young toddlers (almost 2)

Toddlers are at an age where they love social engagement. Social engagement like singing songs or playing with toys together is a great reward. Have your child put the equipment on during practice and then engage in play or singing.

3. Best ways to introduce glasses to toddlers

I typically introduce glasses to toddlers in setting where I would have more control and where it is less stressful, like mealtimes for some kids or during bathtime. They are distracted and you can simply remind them to put glasses back on in a more controlled manner. If your child does take them off during that time, without a big reaction, you would simply replace the glasses and then continue to play in the bathtub or continue to interact while feeding.

Anna, a parent in Arvada, CO:

1. How do we get our son to keep hearing aids on at school and other places that we can’t directly supervise him?

This would require a careful discussion with the school team about how hearing aid use impacts access to education on the IEP. In my experience, starting with use at school during a structured time when one on one attention can be given works best. Avoid starting in the louder settings like gym and the cafeteria.

2. What about when it is too loud in a restaurant/ cafeteria/ gym? He seems overwhelmed with his hearing aids on in places like that and we very often just take the hearing aids off preemptively. Is there a better way to handle extra loud situations?

I believe that louder settings require a slower desensitization process. Use a visual timer to help your child tolerate wearing the aids in these noisier settings for a short amount of time. That also allows you to end on a good note. Increase the amount of time they are worn in this setting over time as your child gets used to them. Some aids also have an app that allows parents to decrease the volume on aids in these louder settings. Teaching your child to advocate for themselves and to say it is too loud could then allow you to decrease the volume but keep the aids in.

3. He eats them!!! How do we get him to stop chewing on his ear molds when he takes them off!??

Look for something that has a similar texture that he can chew (chewelry for example). Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

Allyson, a parent in Albuquerque, NM:

1. Our insurance expects compliance with our daughter’s CPAP to be at 6hrs per night 80% of the month to continue their coverage. We were able to extend it month to month but was causing so much anxiety for us parents. Any tips or ideas dealing with insurance so we can continue a gradual desensitization to her CPAP?

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.

Danielle, a parent in Denver, CO:

1. We did a lot of CPAP practice/desensitization a year ago and our son accepts putting it on at bedtime. The issue is he repeatedly takes it off all night. The folks at the sleep clinic want us to continue to practice during the day but it’s hard to see how that will help with him keeping it on all night, and it’s just such a hassle to drag out every day. Is daytime practice really that effective in this situation?

It depends on why your child is taking it off. If your child is taking it off without knowing it (still asleep), daytime practice can be helpful, as it gets the child to become desensitized to the sensation or feel of the equipment, thus reducing the unconscious need to take it off at night. Some of our families will also gut it out for a few weeks and just sleep in the room with their child and replace the mask each time it is taken off.

2. Also, our son has ruined a couple of pairs of glasses by chewing on them. We’re only letting him wear the under complete supervision. As a result he wears it at school but hardly ever at home since it’s so easy to turn our back and then another pair of glasses is ruined. Any suggestions?

I would have your child play, relax, sit within line of sight when at home. Provide positive attention and praise for keeping his glasses safe. You may also need to give your child something different to chew on (chewelry) and continuously practice having your child chew on the chewelry instead of their glasses.

Laura, a parent in Midlothian, VA:

1. How would you adjust these steps for a child that has no concept of time (aka a 2 year old).

I would have practice occur during play time with your child. Put the equipment on and then begin playing. If your child reaches for their equipment or successfully takes it off, place your hand on the toy they are playing with or move the toy away and indicate that the equipment first must be put back on, and then you can continue to play.

2. Regarding CPAP if a child won’t accept pressure while awake is it a bad idea to put it on after they fall asleep, even if you are working to get them to accept during the day?

I am not a fan of putting it on when they fall asleep only because it can be even more distressing and alarming if your child wakes up in the middle of the night with it on their face. They will have a much more difficult time practicing when awake if they have this experience. That being said, I have many families who have done this and it is been fine.

Mary, a parent in Oakland, CA:

1. My son started off strong using his CPAP machine but after 10 or so nights he refuses to wear it. How do I start over?

Start over the same way you desensitized him the first time. That way, it is a familiar process. I would also think about what could have resulted in the refusal. It could be that he is testing whether you will stay first with the use of CPAP or it could be that he had a cold and that the CPAP was more distressing during that time. Either way, I would follow your previous procedure.

Tangi, a parent in Cranbaury, NJ::

1. How do you deal with insurance companies with cpap machines with the required amount of hours. they require at least 4 hrs which is long in the beginning.

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.


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