6 year old with sensory processing disorder and bathroom issues

[Maggie'sMom]

Just wanted to thank everyone for all of the replies and helpful suggestions and input.

For the person or persons asking if he is seeing an OT -not yet. Still waiting on official written confirmation by the neurologist. We're 99% certain it's SPD but until the doctor signs off and makes it official, we can't address OT with the insurance company. Gotta love insurance companies. He definitely needs OT for a variety of issues -food is a big one, also things that I never understand why he was so uncomfortable about - like hand-washing and getting his nails cut. He also doesn't know how to (and this sounds silly to say) really play with other kids. He tries, but he doesn't understand body language or cues, ignores personal space and just doesn't seem to "get" what the other kids are doing.

I feel silly not recognizing sooner that he did have some special needs looking back on it now, but we'd never heard of SPD before this.

Don't feel silly. These issues are complex and if you haven't dealt with it before, it's easy to miss pieces of the puzzle. It took us years to really start to fit all the different pieces and parts of my DD's needs together.

What you said about your son not understanding body language, ignoring personal space, and having difficulty understanding other kids is so much of what I saw in my DD. I'd suggest you request a multi factor evaluation (MFE) from your school district. You might be able to get some limited OT services through the school. I'd also recommend a thorough speech/language evaluation. Your school district will do this as part of the MFE process, but my experience with our school district was not a positive one. They kept telling me year after year that they evaluated her language skills and there were no problems. Once I finally took her to an outside speech/language pathologist, we discovered she had severe delays in pragmatic language. That was a huge missing piece of the puzzle.

 

[gap2368]

Just wanted to thank everyone for all of the replies and helpful suggestions and input.

For the person or persons asking if he is seeing an OT -not yet. Still waiting on official written confirmation by the neurologist. We're 99% certain it's SPD but until the doctor signs off and makes it official, we can't address OT with the insurance company. Gotta love insurance companies. He definitely needs OT for a variety of issues -food is a big one, also things that I never understand why he was so uncomfortable about - like hand-washing and getting his nails cut. He also doesn't know how to (and this sounds silly to say) really play with other kids. He tries, but he doesn't understand body language or cues, ignores personal space and just doesn't seem to "get" what the other kids are doing.

I feel silly not recognizing sooner that he did have some special needs looking back on it now, but we'd never heard of SPD before this.

The 504 plan is likely something we will look into. Right now, his teacher is very good about letting him use the bathroom whenever he needs to because she can tell he's not doing it for attention or to get out of school work. She says she can suddenly see him jump up or otherwise indicate that he needs to go and she knows that it means right then and there. Her bigger concern I think was just that she didn't want him to keep missing classroom instruction or fall behind because he is constantly running to the bathroom.

Still debating what to do in the parks for our trip, but leaning toward using Goodnites overnite pull-ups with a diaper doubler in them for extra absorbency, since he does wet a lot and frequently (and I know he's going to be drinking a lot in the warmer weather). I know those are a lot more inconvenient to change -and he doesn't care what I use on him - but *I* feel awkward putting my older son in a toddler diaper like his younger brother. I guess it's still strange to me that he can quote whole sections of his favorite movie and name every Cars character from the movie Cars (I wish I was kidding about that, lol) and yet from a sensory perspective his brain and body work entirely differently.

I think I will likely do what someone here suggested and use the companion restrooms and baby care centers as much as possible to change him so to avoid so many people questioning why this past diapered child is still getting their diapers changed.

as other have said you are doing a great job with your son

I can tell you that getting a DX can be very hard I am in my 30s and have spend the majority of my life with sycologest therapies EXTRA and I still do not have any concert DX there is a lot of well we think it is XYZ and ABC and 123, then someone else gose no I do not think you have123 I think it is 567. You get the picture. Some of my DX are easer, and I have done therapy and other things for them. For the most part I have learned to adapt to my disabilities I have done thing ( graduate college) that my Dr said was imposable then gone on to prove then wrong, ( graduated college not only a 2 degree, but got my BS too) I have a speech problem and for the most part it is fairly good but I still struggle some with some words. I still struggle to get my thought out spoken and on paper but I do my best.

As parent the best thing you can do for your child is let them know they can do anything to give them the tools they need to succeed in life, to encourage then to go father then they think they can and to do and be anything they want to. Yes it sounds like your son has some problem. and if we really think about it who dose not. But do not let that stop you from doing what is right for your son. I spent a number of days at disney plugging my ears because the sound was too much I got tired of holding my hand too my ears there were times I had to get out of line ( and this was even using the DAS card, I can remember think well if I use some over the ear protectors then Disney would be so easer for me, but I did not for a long time I was embarrassed bit after a while I decided that it did not matter what other people think, after all I would more then likely never see them. Using the over the ear protectors has changed Disney for me, it dose not make it perfect but better. I am telling you this that who cares if you have to change your son the person next to you dose not need to know why and if they have a problem this then it rally is there problem not yours. Yes First aid /or baby care would work too, but do hat is best for your family for your vacation and if it is better for your and your family to change him in the normal bathroom then do so.

I hoe you have a great vacation and your son start to grow with therapy and dos amazing thing. He has an awesome dad/ and problem a mom to cheer him on

 

[Orlandodreaming]

Don't feel silly. These issues are complex and if you haven't dealt with it before, it's easy to miss pieces of the puzzle. It took us years to really start to fit all the different pieces and parts of my DD's needs together.

What you said about your son not understanding body language, ignoring personal space, and having difficulty understanding other kids is so much of what I saw in my DD. I'd suggest you request a multi factor evaluation (MFE) from your school district. You might be able to get some limited OT services through the school. I'd also recommend a thorough speech/language evaluation. Your school district will do this as part of the MFE process, but my experience with our school district was not a positive one. They kept telling me year after year that they evaluated her language skills and there were no problems. Once I finally took her to an outside speech/language pathologist, we discovered she had severe delays in pragmatic language. That was a huge missing piece of the puzzle.

What is pragmatic language? I think his speech is okay (no stutters, speaks well, tries to use words in their correct context though not always successful at 6 years old), but I'm no expert. Would love to know more.

 

[Aladora]

What is pragmatic language? I think his speech is okay (no stutters, speaks well, tries to use words in their correct context though not always successful at 6 years old), but I'm no expert. Would love to know more.

This might help explain what pragmatic language is.

http://therabee.com/images-pdf/pragmatics-jul08.pdf

Our son is HFA but at almost 12 he still has issues with this, even after years of working on it.

 

[Maggie'sMom]

What is pragmatic language? I think his speech is okay (no stutters, speaks well, tries to use words in their correct context though not always successful at 6 years old), but I'm no expert. Would love to know more.

The link Aladora posted is a great explanation of it. The reason the school evaluation didn't catch the issues is because 1) they seemed more focused on speech (formation of words) than on language (how we communicate), and 2) it turns out DD is really good at faking conversations. She scripts a lot (repeats dialogue and phrases she's heard or read) and she developed a knack for responding in such a way that the person she was talking to would think she understood. But if I stop her and ask her to explain something we are talking about, often she is completely lost. The evaluation tools the school was using were simplistic and she could do well on them. But the outside speech pathologist I took her to used more sophisticated tests, and that's when the problems showed up.

 

[Orlandodreaming]

Thank you both, that's very interesting. His non-verbal communication skills is something I have noticed for some time as being "off" (e.g., missing body language and verbal cues). He often has problems following direction though even when told what to do and repeating it back -and now I'm wondering if he's jut mimicking, but not really processing what he's hearing.

 

[Betty Rohrer]

Thank you both, that's very interesting. His non-verbal communication skills is something I have noticed for some time as being "off" (e.g., missing body language and verbal cues). He often has problems following direction though even when told what to do and repeating it back -and now I'm wondering if he's jut mimicking, but not really processing what he's hearing.

you ight try always using 2 step directions. use go downstairs and get your coat not just go get your coat as an example. and yes he could be parroting what you say. I know with my one daughter having her repeat a direction meant failure. we needed to just give directions and have her do. was hard but ended up having more success that way even though we thought repeating would be easier for her. one other question how is he doing at bringing papers, homework or parent papers home from school?

 

[DLgal]

Has your son been evaluated for autism? He sure sounds like he meets the criteria if he has sensory, speech/language, and socialization issues.

Anyway,both my sons have autism and my youngest has some similar sensory issues like yours. It took him a long time to be out of a pull up at night. I think he was 8 when he finally stayed dry overnight. He holds his pee for HOURS but always says he doesn't have to go. He seriously goes maybe four times a day. Luckily he always makes it. He must really not feel the need to go until his bladder is really full. He also struggles with constipation and a limited diet. The limited diet started at age 2. It's been 9 years and we are still in the same place, food wise. Thankfully, he tolerates vitamins and does actually eat a decent variety of foods from all the food groups. He has grown very well...95th percentile for height, 85th for weight. He's a solid kid so the food thing hasn't slowed him down at all. We do use a full dose of Miralax every other day mixed with apple juice. I have not been warned against using it...His pediatrician is the one who suggested it. This keeps his stool soft and his BM consistent at every other day. He used to hold it for days and then would sit for a long time, have pain, and clog the toilet (TMI but this was our life for years). Basically, kids with SPD don't always get the same body cues as you know, but the holding lot BM can cause actual structural damage to the colon by stretching it out. Over time, this can lead to dysfunction and bowel incontinence. Miralax allows the colon to remain elastic and return to it's normal size. I would go back to using it since your doctor recommended it and didn't know what the warning call was all about. It is an appropriate treatment for the issues your son has as other types of laxatives can be harmful and habit forming. Miralax works differently and does not cause laxative dependency like others do.

As for your trip, I'd personally stick with traditional diapers for a few reasons. They are easier to change while he is standing (no real need to remove pants) and they are more absorbent than pull ups. They are also cheaper. I would focus on having him use the toilet in the hotel room but take the stress off the parks. There are lots of companion bathrooms you can use as well. Use them. Don't think about what others might be thinking. Now is a good time to get used to not worrying about other people. You will never be okay with your child's issues as long as you care what others think. Give your child what he needs and to heck with everyone else's opinions. They don't know your situation.

 

[DLgal]

Thank you both, that's very interesting. His non-verbal communication skills is something I have noticed for some time as being "off" (e.g., missing body language and verbal cues). He often has problems following direction though even when told what to do and repeating it back -and now I'm wondering if he's jut mimicking, but not really processing what he's hearing.

Yep, my son is like this too. It has gotten much better as he has gotten older. Part of it is actually processing the information and the other half is the executive functioning of carrying out the steps. He could have deficits in either or both areas. One of my ASD son's does better with written lists with instructions. The other does better with listening and then doing, but he tends to start walking away before he has heard all the instructions. He also has a hard time with directional instructions (go get me the book that is on the bottom shelf over there)...He walks around like a lost puppy. Colors are more important to him so we try and include colors when possible (go get me the RED book that is on the bottom BROWN shelf). He can orient best when colors are used.

Communication issues are fascinating but frustrating to figure out.

 

[Orlandodreaming]

Has your son been evaluated for autism? He sure sounds like he meets the criteria if he has sensory, speech/language, and socialization issues.

Anyway,both my sons have autism and my youngest has some similar sensory issues like yours. It took him a long time to be out of a pull up at night. I think he was 8 when he finally stayed dry overnight. He holds his pee for HOURS but always says he doesn't have to go. He seriously goes maybe four times a day. Luckily he always makes it. He must really not feel the need to go until his bladder is really full. He also struggles with constipation and a limited diet. The limited diet started at age 2. It's been 9 years and we are still in the same place, food wise. Thankfully, he tolerates vitamins and does actually eat a decent variety of foods from all the food groups. He has grown very well...95th percentile for height, 85th for weight. He's a solid kid so the food thing hasn't slowed him down at all. We do use a full dose of Miralax every other day mixed with apple juice. I have not been warned against using it...His pediatrician is the one who suggested it. This keeps his stool soft and his BM consistent at every other day. He used to hold it for days and then would sit for a long time, have pain, and clog the toilet (TMI but this was our life for years). Basically, kids with SPD don't always get the same body cues as you know, but the holding lot BM can cause actual structural damage to the colon by stretching it out. Over time, this can lead to dysfunction and bowel incontinence. Miralax allows the colon to remain elastic and return to it's normal size. I would go back to using it since your doctor recommended it and didn't know what the warning call was all about. It is an appropriate treatment for the issues your son has as other types of laxatives can be harmful and habit forming. Miralax works differently and does not cause laxative dependency like others do.

As for your trip, I'd personally stick with traditional diapers for a few reasons. They are easier to change while he is standing (no real need to remove pants) and they are more absorbent than pull ups. They are also cheaper. I would focus on having him use the toilet in the hotel room but take the stress off the parks. There are lots of companion bathrooms you can use as well. Use them. Don't think about what others might be thinking. Now is a good time to get used to not worrying about other people. You will never be okay with your child's issues as long as you care what others think. Give your child what he needs and to heck with everyone else's opinions. They don't know your situation.

Thank you for your input. We've thought about autism as well, but no evaluation has been done. I suppose that is something else to raise to the neurologist. We have a friend whose child is on the spectrum, and they are night and day different from my son -their reading skills are super advanced they seem very independent, and in some ways so advanced (they recently asked to be signed up for a computer coding class. She's 6). My son will take a bath, but makes zero effort to actually wash himself, cringes at the water being on him (even washing his hands, he doesn't like to put more than the tips of his fingers in) and only recently was agreeable to taking a shower on his own (when I've tried in the past he's screamed like he was being murdered the minute he got in the shower) --but since he won't really wash himself, it sort of defeats the purpose. Same thing with tooth-brushing, he'll stand there with the toothbrush in his mouth but hardly doing anything unless I stand there and constantly tell him "Brush...keep brushing...no, a little harder than that...don't stop brushing.." I couldn't imagine him ever doing a computer coding class, but if there was a class where he could look at Youtube videos all day, he'd probably like that, lol.

Not sure if this is just a kid who is stubborn, or it's the ADHD, or a sensory thing or something else.

I'm still going back and forth between the diapers and pull-ups, but you're right that I need to not care what people might think. They don't know his specific issues or how my family chooses to deal with them. And it's not like we're ever going to see those people again.

 

[Orlandodreaming]

Yep, my son is like this too. It has gotten much better as he has gotten older. Part of it is actually processing the information and the other half is the executive functioning of carrying out the steps. He could have deficits in either or both areas. One of my ASD son's does better with written lists with instructions. The other does better with listening and then doing, but he tends to start walking away before he has heard all the instructions. He also has a hard time with directional instructions (go get me the book that is on the bottom shelf over there)...He walks around like a lost puppy. Colors are more important to him so we try and include colors when possible (go get me the RED book that is on the bottom BROWN shelf). He can orient best when colors are used.

Communication issues are fascinating but frustrating to figure out.

Sometimes, my son acts completely clueless about the most simple tasks. Like if you say "Throw your plate out, please", he knows the garbage can is in the kitchen and can do that. But if we are out somewhere -like Disney -and I hand him his plate and say "Throw your plate out in the trash, please", he's like a deer in headlights --will have no idea what to do, even if the trash can is a foot away from him and you point it out. We have to walk him through the steps. His teacher says he's like that in school too - like he's unsure of where something needs to be put back or put away, even if he's done the same task many times before.

 

[wilkeliza]

Thank you for your input. We've thought about autism as well, but no evaluation has been done. I suppose that is something else to raise to the neurologist. We have a friend whose child is on the spectrum, and they are night and day different from my son -their reading skills are super advanced they seem very independent, and in some ways so advanced (they recently asked to be signed up for a computer coding class. She's 6). My son will take a bath, but makes zero effort to actually wash himself, cringes at the water being on him (even washing his hands, he doesn't like to put more than the tips of his fingers in) and only recently was agreeable to taking a shower on his own (when I've tried in the past he's screamed like he was being murdered the minute he got in the shower) --but since he won't really wash himself, it sort of defeats the purpose. Same thing with tooth-brushing, he'll stand there with the toothbrush in his mouth but hardly doing anything unless I stand there and constantly tell him "Brush...keep brushing...no, a little harder than that...don't stop brushing.." I couldn't imagine him ever doing a computer coding class, but if there was a class where he could look at Youtube videos all day, he'd probably like that, lol.

Not sure if this is just a kid who is stubborn, or it's the ADHD, or a sensory thing or something else.

I'm still going back and forth between the diapers and pull-ups, but you're right that I need to not care what people might think. They don't know his specific issues or how my family chooses to deal with them. And it's not like we're ever going to see those people again.

I wouldn't try to compare him to other kids especially if he could be on the spectrum which he very well could based on what you have shared. For every kid that is a genius but with minor social issues on the spectrum there is another who self harms and has no academic abilities and will never be able to care for themselves and there there are all the people in between those two.

OP the biggest thing for you is to do what is best for your son and family. Who cares what anyone else thinks. If anyone judges you for changing your 6 year old who at minimum has SPD then thag is on them and not on you at all. You are doing what is best for your son so he can experience a place where he has fun.

 

[Maggie'sMom]

There's a saying: "If you know one person with autism, you know one person with autism." There is a reason it is now referred to as autism spectrum disorder. There are so many variations and levels of functioning. You can't say your son does or does not have autism based on how he compares to one other child. From what you've posted, your son is exhibiting many of the traits associated with autism, but there are other diagnoses, such as SPD, that are a component of autism but also can be a diagnosis of its own. None of us can diagnose your son over the internet. My thought is you are already working with a neurologist so he may be the best suited to direct you to the appropriate professionals for testing and services outside of the school, but start getting the school special education people involved so they can qualify your son for services and accommodations in the school setting.

 

[DLgal]

I have two sons on the spectrum and they are COMPLETE opposites, it literally every sense of the word. From their tastes in food, to their likes and dislikes, to their athletic and academic abilities, to their social skills. Literally if one excels in a specific area, the other has a problem with it. I have one who is the savant style "genius" (he is literally a human calculator) but his social skills are nonexistent. My other son is quite talkative, despite having speech apraxia, bit he is far more social. He is very artistic. But math and academics in general confound him. Both are considered "high functioning" in that they can manage their own self care, but they are both moderately affected by autism in general, when you look at the whole picture.

You can't compare kids on the spectrum to each other.

 

[tinkerbellandeeyor]

Thank you for your input. We've thought about autism as well, but no evaluation has been done. I suppose that is something else to raise to the neurologist. We have a friend whose child is on the spectrum, and they are night and day different from my son -their reading skills are super advanced they seem very independent, and in some ways so advanced (they recently asked to be signed up for a computer coding class. She's 6). My son will take a bath, but makes zero effort to actually wash himself, cringes at the water being on him (even washing his hands, he doesn't like to put more than the tips of his fingers in) and only recently was agreeable to taking a shower on his own (when I've tried in the past he's screamed like he was being murdered the minute he got in the shower) --but since he won't really wash himself, it sort of defeats the purpose. Same thing with tooth-brushing, he'll stand there with the toothbrush in his mouth but hardly doing anything unless I stand there and constantly tell him "Brush...keep brushing...no, a little harder than that...don't stop brushing.." I couldn't imagine him ever doing a computer coding class, but if there was a class where he could look at Youtube videos all day, he'd probably like that, lol.

Not sure if this is just a kid who is stubborn, or it's the ADHD, or a sensory thing or something else.

I'm still going back and forth between the diapers and pull-ups, but you're right that I need to not care what people might think. They don't know his specific issues or how my family chooses to deal with them. And it's not like we're ever going to see those people again.

Have you thought of trying a electric toothbrush the toothbrush does most of the work all he has to do is move it around I think I have seen kid ones

 

[Orlandodreaming]

There's a saying: "If you know one person with autism, you know one person with autism." There is a reason it is now referred to as autism spectrum disorder. There are so many variations and levels of functioning. You can't say your son does or does not have autism based on how he compares to one other child. From what you've posted, your son is exhibiting many of the traits associated with autism, but there are other diagnoses, such as SPD, that are a component of autism but also can be a diagnosis of its own. None of us can diagnose your son over the internet. My thought is you are already working with a neurologist so he may be the best suited to direct you to the appropriate professionals for testing and services outside of the school, but start getting the school special education people involved so they can qualify your son for services and accommodations in the school setting.

You're absolutely correct, and I have no idea if he is or isn't on the spectrum, and I hope I didn't make it sound like I was trying to diagnose him. I have zero qualifications in that field, so I will leave that to the medical professionals.

 

[Orlandodreaming]

I have two sons on the spectrum and they are COMPLETE opposites, it literally every sense of the word. From their tastes in food, to their likes and dislikes, to their athletic and academic abilities, to their social skills. Literally if one excels in a specific area, the other has a problem with it. I have one who is the savant style "genius" (he is literally a human calculator) but his social skills are nonexistent. My other son is quite talkative, despite having speech apraxia, bit he is far more social. He is very artistic. But math and academics in general confound him. Both are considered "high functioning" in that they can manage their own self care, but they are both moderately affected by autism in general, when you look at the whole picture.

You can't compare kids on the spectrum to each other.

You're right, and I shouldn't have done that.

 

[Orlandodreaming]

Have you thought of trying a electric toothbrush the toothbrush does most of the work all he has to do is move it around I think I have seen kid ones

Suppose that's worth a shot -although I wonder if the vibration would feel weird for him. I use the Disney toothbrusing app so that he will brush for 2 minutes but I think he gets distracted by looking at the picture being uncovered so he sits with the brush in his mouth but doesn't actually do anything. I've tried using an hourglass too, and that works a little better, although sometimes he likes watching the sound pour through it instead, lol.

 

[Aladora]

We use a toothbrush that has three lights, green then yellow and then finally red. It flashes green for one minute then yellow for another minute and then when the two minutes are done it flashes red. It really helped our son.

As for whether or not your son is autistic, that is for the specialists to determine but I echo what others here have said, just like neuro-typical people all have different strengths and weaknesses so do people with autism. Recently the autism "spectrum" has been described more as a circle instead of a line. This comic describes it very well:

https://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

 

[nhmommy]

I didn't read all of the replies but my son has bathroom issues too. I really encourage you to contact a urologist constipation can cause pressure on the bladder that makes it difficult to impossible for him to tell when his bladder is getting full and cause him to need to go frequently. I would use diapers or Huggies pull-ups or overnights. The pull-ups have velcro on the sides so you can pull them off or put them on without taking off his pants and they are easy to pull down when toileting Im not sure if the overnights have the velcro. I would not put him in underwear that could cause cleanup issues you don't want to deal with. Again I really really encourage you to see the urologist it made a huge difference in my son. It hasn't fixed all the problems but we now usually have a 20 min warning and rarely have pee accidents anymore.