Tips for a teen whose sensory issues have been more disregulated lately

[Kindermouse]

Hi everyone. My 14 DS has sensory issues along with ADHD, Tourettes (definitely lessening tics for over a year though), OCD, anxiety and depression.

He has really improved over the last couple of years and, since we hardly used it on our last trip to Disneyland anyway, we are planning to not use DAS for our trip in 35 days. Taking these steps makes him feel very good about himself and those feelings help him make a lot of progress and improvement in and of themselves.

His sensory issues have been more disregulated lately though-this tends to display as him being easily frustrated/snappy with people, difficulty rousing him in the morning, and him requiring/requesting essential oils and deep pressure in order to sleep (typically he needs me to squeeze his feet or his head for dear life and sleep with a VERY weighted blanket) and him having a lot of bruises (he doesnt feel much pain when he is disregulated and he is sensory seeking which leading to him knocking into things).

I know that I can help him by having him bring his snap back hats which he wears very tight to give himself pressure on his head, and sunglasses to provide visual sensory relief. What else could help him have some relief in the parks that wouldnt make him "look weird" since this is something he worries a lot about nowadays. He doesnt get OT services any more (the school phased them out a couple of years ago for him) and without having his OT to ask I often have to turn to the internet.

Also anything I should avoid outright or do differently? How about for HEA viewing? should I bite the bullet and just do a dessert party to make it less stressful? We have Be Our guest at 9:55 that night so I didnt book it right away but there is availability the night we are going to watch if the hub has been to crazy.

 

[gap2368]

if he does not like crowded areas then I would do the dessert party.

 

[kirstenb1]

Would headphones or sunglasses help? He seems to be a seeker, so maybe not. How about a squeeze ball for the lines?

 

[Shanti]

Hi everyone. My 14 DS has sensory issues along with ADHD, Tourettes (definitely lessening tics for over a year though), OCD, anxiety and depression.

He has really improved over the last couple of years and, since we hardly used it on our last trip to Disneyland anyway, we are planning to not use DAS for our trip in 35 days. Taking these steps makes him feel very good about himself and those feelings help him make a lot of progress and improvement in and of themselves.

His sensory issues have been more disregulated lately though-this tends to display as him being easily frustrated/snappy with people, difficulty rousing him in the morning, and him requiring/requesting essential oils and deep pressure in order to sleep (typically he needs me to squeeze his feet or his head for dear life and sleep with a VERY weighted blanket) and him having a lot of bruises (he doesnt feel much pain when he is disregulated and he is sensory seeking which leading to him knocking into things).

I know that I can help him by having him bring his snap back hats which he wears very tight to give himself pressure on his head, and sunglasses to provide visual sensory relief. What else could help him have some relief in the parks that wouldnt make him "look weird" since this is something he worries a lot about nowadays. He doesnt get OT services any more (the school phased them out a couple of years ago for him) and without having his OT to ask I often have to turn to the internet.

Also anything I should avoid outright or do differently? How about for HEA viewing? should I bite the bullet and just do a dessert party to make it less stressful? We have Be Our guest at 9:55 that night so I didnt book it right away but there is availability the night we are going to watch if the hub has been to crazy.

Have you considered private OT? That really helped my autistic son, who is now high-functioning. He also has ADHD, which he takes the prescription supplement Vayarin for, instead of conventional meds. He's doing well in school. He also takes a complex B vitamin daily, 5HTP and GABA. When he was at his most unregulated, Therapeutic Listening CDs (selected by his OT, who also told us how to use them), were very helpful.

 

[Kindermouse]

Would headphones or sunglasses help? He seems to be a seeker, so maybe not. How about a squeeze ball for the lines?

He is a seeker for some things and then an avoider for others. He is a seeker for smells-this can be easily managed now but when he was little and would sniff things and people....yeah

He is a seeker for proprioceptive feedback. knocking around and literally bouncing off of walls. he needs so much weight and pressure at time that it is kind of overwhelming to provide that much weight and pressure. over the summer I started joking that if I kept squeezing his head that hard his brains were going to come out of his ears. I actually worried that I was going to injure him but he kept saying more more more.

He is an avioder of soft touch-things like tags and seams of clothes are big deal but we just shop accordingly and this is easily dealt with. In the parks its always been a non issue because he can stand things like the feeling of the restraints and ride seats for short periods.

He is an avoider of visual stimuli- and yet he likes the fireworks (with headphones) and loves world of color. go figure.

He is mixed in auditory-he likes the noises that he makes and that he can control but doesnt at all like the noises of the world or noises other people make. He might be making noises himself and then ask someone else if they can chew quieter or if we can turn off the fan while his music is on.

Have you considered private OT? That really helped my autistic son, who is now high-functioning. He also has ADHD, which he takes the prescription supplement Vayarin for, instead of conventional meds. He's doing well in school. He also takes a complex B vitamin daily, 5HTP and GABA. When he was at his most unregulated, Therapeutic Listening CDs (selected by his OT, who also told us how to use them), were very helpful.

I have a little but its not covered by insurance and we struggled to get him to private appointments because I work all day and am the only that can bring him to appointments and I have to ask for so much time off as it is for his other doctor appointments-Psychiatrist who proscribes his meds, psychologist that he see for therapy, social skills/life skills group.

I am not familiar with Vayarin for ADHD. We had to leave the stimulants behind a couple of years ago becuase they stopped working and starting causing increased irritability. I'll tell you have grew so fast when I took him off the stimulants it made me feel bad that he had been on them but they really did help for a while. Right now he takes Remeron (for anxiety/OCD), Tennex (for ADHD) and periactin (For abdominal migraines) and GABA, magnesium, and fish oil supplements.

I would love to hear more about the theraputic CD's I have never heard of that. I tried mindfulness CD's for him before but he HATED them. If you have information about CD's that would be better I would love that.

 

[Realfoodfans]

It sounds like you are a great Mum and support for him. There are so many out there, like my daughter too, who work so hard to get the best for their children. My grandson is only 8 so we have the teenage years ahead. His OT was amazing but due to constraints within our NHS he can no longer see her. He wears sunglasses a lot and ear defenders for fireworks etc. They do change though don't they - he used to chew all sorts of random things - but particularly his clothes - his mum got him chewables that could be washed etc but he's now stopped that.
He self stimulates by rocking - and needs space and often privacy to do that. He is such a lovable boy we all want the best for him.
I hope you have a wonderful trip - please report back how you go - we go a couple of weeks after you.

 

[Shanti]

He is a seeker for some things and then an avoider for others. He is a seeker for smells-this can be easily managed now but when he was little and would sniff things and people....yeah

He is a seeker for proprioceptive feedback. knocking around and literally bouncing off of walls. he needs so much weight and pressure at time that it is kind of overwhelming to provide that much weight and pressure. over the summer I started joking that if I kept squeezing his head that hard his brains were going to come out of his ears. I actually worried that I was going to injure him but he kept saying more more more.

He is an avioder of soft touch-things like tags and seams of clothes are big deal but we just shop accordingly and this is easily dealt with. In the parks its always been a non issue because he can stand things like the feeling of the restraints and ride seats for short periods.

He is an avoider of visual stimuli- and yet he likes the fireworks (with headphones) and loves world of color. go figure.

He is mixed in auditory-he likes the noises that he makes and that he can control but doesnt at all like the noises of the world or noises other people make. He might be making noises himself and then ask someone else if they can chew quieter or if we can turn off the fan while his music is on.


I have a little but its not covered by insurance and we struggled to get him to private appointments because I work all day and am the only that can bring him to appointments and I have to ask for so much time off as it is for his other doctor appointments-Psychiatrist who proscribes his meds, psychologist that he see for therapy, social skills/life skills group.

I am not familiar with Vayarin for ADHD. We had to leave the stimulants behind a couple of years ago becuase they stopped working and starting causing increased irritability. I'll tell you have grew so fast when I took him off the stimulants it made me feel bad that he had been on them but they really did help for a while. Right now he takes Remeron (for anxiety/OCD), Tennex (for ADHD) and periactin (For abdominal migraines) and GABA, magnesium, and fish oil supplements.

I would love to hear more about the theraputic CD's I have never heard of that. I tried mindfulness CD's for him before but he HATED them. If you have information about CD's that would be better I would love that.

Vayarin is great as it's not a stimulant, but rather a prescription strength & purity of a very specific type of omega vitamin. ADHD kids need more of that particular omega in their brains, according to my son's neurologist. My son has been on it for years with no side effects. It doesn't work immediately like stimulants, but rather takes a few months to really get into the system & make improvements. The upside to the gradual way Vayarin works is that a missed dose doesn't ruin his day.

Therapeutic listening CD's (the modulated kind that target specific issues) really helped my son, but they aren't something you can buy on your own. We had to have an occupational therapist prescribe certain ones for my son to listen to. It is music with certain sounds notched out & added in, to make the brain respond in a certain way. He had to listen for 15-30 minutes per day, once or twice a day, depending on the CD. He couldn't do any TV/radio/computer activities while listening, but other activities & conversations were fine. No need to sit still & silent while listening, just no other technology allowed while the headphones were on. I found car rides to be a good time for him to listen. The only downside was that I couldn't have the radio on.

Our OT also would brush him each session. Do you know about brushing?

 

[Kindermouse]

Vayarin is great as it's not a stimulant, but rather a prescription strength & purity of a very specific type of omega vitamin. ADHD kids need more of that particular omega in their brains, according to my son's neurologist. My son has been on it for years with no side effects. It doesn't work immediately like stimulants, but rather takes a few months to really get into the system & make improvements. The upside to the gradual way Vayarin works is that a missed dose doesn't ruin his day.

Therapeutic listening CD's (the modulated kind that target specific issues) really helped my son, but they aren't something you can buy on your own. We had to have an occupational therapist prescribe certain ones for my son to listen to. It is music with certain sounds notched out & added in, to make the brain respond in a certain way. He had to listen for 15-30 minutes per day, once or twice a day, depending on the CD. He couldn't do any TV/radio/computer activities while listening, but other activities & conversations were fine. No need to sit still & silent while listening, just no other technology allowed while the headphones were on. I found car rides to be a good time for him to listen. The only downside was that I couldn't have the radio on.

Our OT also would brush him each session. Do you know about brushing?

I am familiar with Wilberger (sp?) brushing though I havent done it myself-the OT used to start the session with it. I could probably pick up a brush on amazon easily enough. That's a good idea.

 

[Shanti]

I will add that I'm really surprised that your health insurance doesn't cover any kind of OT for your son's disability. If he could be diagnosed to be anywhere on the autism spectrum (which is certainly possible given his sensory issues and other issues), it would likely be covered. Has he ever been seen by a neurologist?

Some private OTs offer Saturday appointments, btw. I've always been a working mom & that's mostly how I got my son his therapy: Saturdays.

Good luck with everything!

 

[Kindermouse]

We have been to the neurologist, thats who diagnosed his Tourettes. I was pursuing an ASD diagnosis at the time but they insisted he didnt qualify because he did have any speech delaying or significant abnormalities of speech and she said those are a must check box for an autism diagnosis. They insist that sensory processing issues are also part of ADHD as well as stimming.

I even tried to get around the lack of OT services offered by my insurance by requesting PT based on the school OT's recommendation but no luck. The schools OT provided services for retained primitive reflexes and sensory integration and the PT said that they dont provide the services that he needs that I would need to take him to an OT for those services. It has been a battle all these year and I have always thought that it wouldnt have had to be if he had the Autism dx instead of the multiple dx'x that they put together to cover all of his symptoms and difficulties.

 

[LadyD]

We have been to the neurologist, thats who diagnosed his Tourettes. I was pursuing an ASD diagnosis at the time but they insisted he didnt qualify because he did have any speech delaying or significant abnormalities of speech and she said those are a must check box for an autism diagnosis. They insist that sensory processing issues are also part of ADHD as well as stimming.

I even tried to get around the lack of OT services offered by my insurance by requesting PT based on the school OT's recommendation but no luck. The schools OT provided services for retained primitive reflexes and sensory integration and the PT said that they dont provide the services that he needs that I would need to take him to an OT for those services. It has been a battle all these year and I have always thought that it wouldnt have had to be if he had the Autism dx instead of the multiple dx'x that they put together to cover all of his symptoms and difficulties.

That is interesting that the neurologist sided that way. Would a second opinion be beneficial for him at this point?

To your original question for the post, and I'm sure this comment is super obvious, I would definitely give him the opportunity to have as normal of a sleep schedule as possible while at WDW. I've found that sleep deprivation is the enemy when it comes to negatively impacting my ability to cope with my surroundings.

The "not looking weird" part is hard. I'm a 30 year old woman without children who carries around a Duffy bear in a Sully costume from Monsters Inc. because stroking the soft fur helps soothe me when I'm getting overwhelmed, but it definitely looks a bit odd from an outside perspective. I would definitely cater your touring plan to avoiding certain areas during high crowd times as best you can though. Would carrying a backpack with items for the day (like water bottles, sunscreen, etc)that straps across the waist and chest help him at all?

 

[Kindermouse]

That is interesting that the neurologist sided that way. Would a second opinion be beneficial for him at this point?

To your original question for the post, and I'm sure this comment is super obvious, I would definitely give him the opportunity to have as normal of a sleep schedule as possible while at WDW. I've found that sleep deprivation is the enemy when it comes to negatively impacting my ability to cope with my surroundings.

The "not looking weird" part is hard. I'm a 30 year old woman without children who carries around a Duffy bear in a Sully costume from Monsters Inc. because stroking the soft fur helps soothe me when I'm getting overwhelmed, but it definitely looks a bit odd from an outside perspective. I would definitely cater your touring plan to avoiding certain areas during high crowd times as best you can though. Would carrying a backpack with items for the day (like water bottles, sunscreen, etc)that straps across the waist and chest help him at all?

At this point we are so far into the game that I dont know if changing the DX would be of as much use as it would have been when he was young. His entire life we have had an HMO that I think is not the greatest to have if you have special needs child but I have to select a plan that I can afford the premiums for and that I can afford the copays so that we can actually use it. That leaves me with what I have (which kind of burns me up since his father is supposed to provide his insurance I guess)

As far as Duffy goes I keep telling him that when he grows up he wont care so much what people think anymore and he will feel more comfortable getting his needs met because-well-what strangers think doesnt really matter. Its the greatest freedom of adulthood-freedom from peer/societal pressure.

Its funny that you mentioned the heavy backpack because I usually try to go bagless but heavy work like a heavy backpack is often helpful for regulating him. Thanks for bringing it up! sometimes I try so hard to be optimal that i forget things like that.

 

[mamabunny]

Never worry about looking (or being) "normal". "Normal" is a setting on the washing machine, nothing more.

At our house, we learned a long time ago to just embrace whatever makes us different; I know it seems easier said than done, especially when you have kids/teens facing peer pressure - but once you can accomplish it, it's very freeing.

I know what you are thinking. I'm an elderly Rabbit, who doesn't care what other people think of her anymore, so it's easy for me. But it wasn't always easy, and I spent a great deal of time agonizing over these same things - for myself, my DH and our (now adult) daughter.

My Mom was a Special Needs Teacher, many years ago. She was one of the first to be certified in our state, and she had all kinds of kids in her classrooms over the years. And she was the one who told me that - that "normal" is an illusion, and that *everyone* has *something* that is "wrong" with them - it's just that some of us can hide it easier than others. And some of us are willing to pay a high price - either financially, emotionally, or physically - to try and appear "normal". Some people struggle with reading. Others struggle with math. Some people can't walk, or can't hear, or can't see. It doesn't matter - no one is perfect.

Just be you. Your wonderful, actual self. And if other people don't like it? Too bad for them. They missed out on what everyone here already knows - that you are awesome, exactly as you are!

 

[LadyD]

At this point we are so far into the game that I dont know if changing the DX would be of as much use as it would have been when he was young. His entire life we have had an HMO that I think is not the greatest to have if you have special needs child but I have to select a plan that I can afford the premiums for and that I can afford the copays so that we can actually use it. That leaves me with what I have (which kind of burns me up since his father is supposed to provide his insurance I guess)

As far as Duffy goes I keep telling him that when he grows up he wont care so much what people think anymore and he will feel more comfortable getting his needs met because-well-what strangers think doesnt really matter. Its the greatest freedom of adulthood-freedom from peer/societal pressure.

Its funny that you mentioned the heavy backpack because I usually try to go bagless but heavy work like a heavy backpack is often helpful for regulating him. Thanks for bringing it up! sometimes I try so hard to be optimal that i forget things like that.

Being an adult is incredibly liberating in many ways for taking care of yourself. Plus I feel like once you hit adulthood, the value of simple, easy solutions takes priority over appearances any day hahahaha.

I hope you and your family are able to have a fun trip and everything goes well for your son on the trip

 

[persimmondeb]

I'm going to agree with the person who recommended the dessert party. It's not the only way to manage, but we did it with our son when he was fourteen or so, and it made a huge differrence. The noise isn't a problem for him, but does NOT like crowds, and having our own table with unlimited snacks worked very, very well. We usually have to skip fireworks, and he really enjoyed that.

 

[KatieCharlotte]

I just went to Disneyland with a teen who has Tourette's, anxiety, and sensory issues, and also doesn't want to stand out or be treated like he needs extra help. We ended up getting the DAS after three unexpectedly long lines really negatively affected him and then used it very sparingly, so I wouldn't rule it out as a option if needed. Also, Disney is a place where adults dress in the colors of their favorite characters and wear ears, so it's really hard to stand out. I really like the idea of having him carry a bag of water bottles and snacks for the family, especially if he knows that you don't really like carrying a bag and the pressure helps him. That sounds like a win-win -- meeting his needs while also making him see how he can help YOU. (My son is basically the opposite and doesn't want to wear anything but lightweight shirts and shorts.)

The dessert party that we attended was the highlight of our trip. My son could sit back, away from everyone, and watch the show in a non-stressful environment -- and know that it was because I work hard and could pay for it, not because he has Tourette's. I also noticed throughout the trip that his mood improved when he was able to sit down somewhere relatively quiet and eat food that he finds comforting, like bread and pizza. He wore his sunglasses all the time, including at night for shows with bright lights/fireworks.

We took long afternoon breaks. The mornings were really the best time for him to be at the parks to avoid crowds. If you can't get back to your hotel, I would recommend at least finding lower sensory activities for the afternoon. Running around on a playground is still helpful for my son. My son also doesn't do rides with a lot of motion, so he would sit down somewhere and play on his phone while we rode, which gave him a break.

 

[Kindermouse]

The dessert party that we attended was the highlight of our trip. My son could sit back, away from everyone, and watch the show in a non-stressful environment -- and know that it was because I work hard and could pay for it, not because he has Tourette's. I also noticed throughout the trip that his mood improved when he was able to sit down somewhere relatively quiet and eat food that he finds comforting, like bread and pizza. He wore his sunglasses all the time, including at night for shows with bright lights/fireworks.

I went ahead and booked the dessert party!

We took long afternoon breaks. The mornings were really the best time for him to be at the parks to avoid crowds. If you can't get back to your hotel, I would recommend at least finding lower sensory activities for the afternoon. Running around on a playground is still helpful for my son. My son also doesn't do rides with a lot of motion, so he would sit down somewhere and play on his phone while we rode, which gave him a break.

We usually do afternoon breaks at Disneyland-sometimes really long ones like 6 hours so we basically do mornings and later evening in the park only. but I am worried that this will not work as well with the transportation needs at WDW. Is it really a huge issue to get to and from the parks and resorts? At Disneyland I always stay walking distance so I can walk back at forth as often as we like. With dinner ADRs is this too difficult.

For rides my son loves the spinning motion rides but I have to watch it there. He will think its fine and even on swings he will spin and spin and spin until...its suddenly not fine AT ALL. We had an indoor swing that mounted to his door frame and he loved it but it did do him a wrong a time or two.

 

[KatieCharlotte]

I went ahead and booked the dessert party!




We usually do afternoon breaks at Disneyland-sometimes really long ones like 6 hours so we basically do mornings and later evening in the park only. but I am worried that this will not work as well with the transportation needs at WDW. Is it really a huge issue to get to and from the parks and resorts? At Disneyland I always stay walking distance so I can walk back at forth as often as we like. With dinner ADRs is this too difficult.

For rides my son loves the spinning motion rides but I have to watch it there. He will think its fine and even on swings he will spin and spin and spin until...its suddenly not fine AT ALL. We had an indoor swing that mounted to his door frame and he loved it but it did do him a wrong a time or two.

I'm glad you booked the dessert party. I never used to splurge like that, but the WOC dessert party was really our very best memory of the trip. Standing in a crowd would be overwhelming and miserable, and it was nice to have a special experience that had nothing to do with anyone's diagnosis.

Yes, afternoon breaks are much easier at Disneyland. Where are you staying? We usually have a car at WDW, but it's still nothing like walking ten minutes to your hotel. At WDW, we've tried to take advantage of places like Tom Sawyer Island, where it's possible to run around and decompress. When we take a longer WDW trip, we also typically have one day when only enter the parks after dinner. But, we've never really done ADRs, and they would also give you a different kind of break from the crowds.

 

[Kindermouse]

We are staying at Pop-not terribly close to anything but a smaller resort with a dedicated bus and newly refurbished rooms.

The dessert party is a splurge but it doesn't hurt too bad. Our union has been in negotiation of our contract for over a year and they finally came to an agreement that means a back pay check for me

 

[LadyD]

We are staying at Pop-not terribly close to anything but a smaller resort with a dedicated bus and newly refurbished rooms.

The dessert party is a splurge but it doesn't hurt too bad. Our union has been in negotiation of our contract for over a year and they finally came to an agreement that means a back pay check for me

The bus lines for Pop can get bonkers. Depending on what hours you're going back and forth, it could make going back to the hotel to rest harder if you have an in park ADR. I've found you usually need to budget about an hour to get from your hotel to an in park ADR using the bus system. However, I discovered that using Uber around WDW is a lot easier, less stressful, and can be quite the time saver, so that may work as an option if he really needs a break and you don't want to loose too much time to the bus system if the lines look bad? Usually that option is about $10-$15 each way depending on the distance and the time of day.