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Household Dynamic with Multiple SPD kids


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I have never posted on the learning challenges board but lately the intensity in our house has jumped through the roof and I'm putting a lot of things together. We have four children. None are autistic but ALL show varying degrees of SPD behavior. I have two who are sensory seeking and two who are highly sensitive. My 5 year old is starting OT for resistant eating next week and I'm looking forward to working on that specific issue but my question really has to do with the overall household dynamic, the mood or rhythm of our days. We have a longstanding homeschool structure. I have a third grader, 2nd grader, one in K and an 11 month old baby. Activities, family meals, etc... are all predictable. We have major problems with transitions and times throughout the day that are unstructured or open-ended. The kids are live wires and scream and cry continually many days. School is often a calm bright spot though for my oldest DD it can be a little fraught if something different is introduced. They have no attention problems and work well above grade level so learning itself is not stressful. Its just EVERYTHING else. I'm wondering what has helped families where this has been the general dynamic. Bedtime is tough for 3 out of 4 (the other, bless him, is like an old man and puts himself to bed with a cup of tea and a couple of crosswords), transitions are tough, eating at all is tough. Ugh. I know that this sounds grim and in many ways that's inaccurate. Sometimes we are an interesting, artistic, loving, thoughtful family. It's the margins. And there are a lot of margins. 

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Have you read Zones of Regulation yet? Are you building in sensory times throughout the day? 

 

Do you have a grandma or someone you can bring in? Someone you can send them out to? 

 

Are they getting OT? Have they all been checked for retained reflexes?

 

I would add exercises for retained reflexes to EVERYONE'S morning routine, whether they need them or not. I would increase sensory diet. I would use visual checklists so you can prompt, fade prompts, and increase independence. I would use visual schedules for your plan for the day. It sounds like you need a board with velcro strips for everyone and everyone's plan on there, so they ALL get the routine. 

 

For transitions, same gig. You're going to need to increase the structure of the transitions.

 

Uh, open-ended days aren't safe. That's called it really helps to have a grandma or auntie or someone you can call, your back-up. Unstructured, open-ended days are not safe. Even if it costs you, you want someone you can call.

 

PS. Welcome to LC! You definitely fit in here! :D

Edited by OhElizabeth
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Thank you! Hmm. I worked through your response and thought and researched each suggestion. So here's where we are on those:

 

Retained Reflexes- I'll be honest, I've never heard of them. I think my kids would be enthusiastic about the exercises though and it seems entirely harmless to work through them as part of our morning routine.

 

Sensory Diet - Though things have kind of come to a head recently I have a fairly high "sensory IQ" as a parent and we've always tried to work a lot of the things OTs recommend into our days. We have an indoor hammock swing that spins and is used throughout the day, we have an indoor trampoline, we play music during transitions and in the morning and at night, they play instruments, I encourage showers or long baths as a reset, we use massage with my oldest who has the most trouble with bed, I'm sure there are other things I'm not thinking of. I wonder if there's some specific component that should be tweaked or added to?

 

OT- My son, in many ways the "easiest" kid I have also has the most overt and diagnosable symptoms. He is a very resistant eater and we have gone back and forth over OT since he was a baby. Our doctor thinks it's unnecessary because he takes vitamins. I think that's nonsense. The kid eats three foods guys. Three. We have finally pursued OT on our own and he starts next week.

 

Grandma does help a tiny amount but she never has all four on her own. She is younger and has hiked the AT. She's physically able but finds them overwhelming. I get it. We have often considered hiring help but they have what I guess I would call moderate separation anxiety. There have been times when leaving them (even to take a nap in my own house) felt impossible but right now they function fairly well (daughter even goes to a study center on her own two days a week) when I'm not there. Separation is not relaxed or easy, but it's happening.

 

As far as our days being "open -ended" they are not. I think I didn't explain that well. We have a visual schedule and a morning meeting where we discuss the days events and highlight anything different. Their instrument, chores, school schedule has been the same for years. However, in any day there is gap time. We schedule by the half hour but they need some of that time to be designated for play. When they get going they play really well and it's healthy and good. I will not give that up. But making room for that play time requires a certain level of self-determination. I have sometimes put on the schedule "10:00 - Legos" or something but that doesn't always work and it's not always best. I think they need to pursue their own interests and think of things for themselves even if it's rocky. I'm guessing you agree but were picturing more of a day-long drift.

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You need to get Zones of Reg. You can become even more precise and targeted. We can have a plan where we have columns for red, green, yellow, blue and we identify where we're at and what thing we do. And then in the morning we pick several and do them either to keep us green or to get us green, because only green is really "ready to learn." 

 

Sounds vital that you start OT.

 

Yes, my ds with autism has this issue with leaving me. When he was younger, he could only leave a brief while. I can leave now, but when it goes longish he gets stressed and is then out of kilter. 

 

I think it may be a misconception to say none of these kids has autism. I know you're saying that and think you have evidence, but it doesn't sound very probable. Just saying.

 

That issue with the feeding is really, really concerning. I'm very glad you're getting OT. Also there are SLPs that specialize in feeding.

 

If you went through the DSM criteria and concluded any of your kids qualified under ASD, which just mathematically some might, then you could get some in-home ABA, get a behaviorist, get some services going. Have any of these kids had full evals? Have any of them had language testing like the CELF or CASL? I'm asking, because speech therapy for language issues would be another way to get some intervention and a break for you. 

 

What you're doing with the visual schedules for your day, the morning meeting, etc. sounds FABULOUS. Have you thought about using a choice board for their free play time? So you'd put up a board that would have all their choices, with pictures, so they could make their choice. They could even make the choice during morning meeting. 

 

Unfortunately, free play and figuring out how to till your time is actually really tricky and a skill to work on. What you might also do, or what they did with my ds when I had workers in the home, was to start with very short times. Like they'd set a timer for *5 minutes* and he'd be in a room with a board showing his list of choices or a basket filled with his choices. So in that room he might have a reading nook, a basket with puzzles and file folder games, a rug with a toy, a cozy chair with a blanket, and shelves with picture books. And they PRACTICED those tools so they knew he knew how to use them. And they set a timer for 5 minutes and worked on it. The worker would read or do something for 5 minutes while he needed to busy himself and make choices and not jump on her or whine or prod or ask for attention. 

 

And that was HARD.

Edited by OhElizabeth
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The last bit you typed about teaching independence describes precisely the way in which I have tried to teach it. And yes, HARD. Though in the long run I have seen progress.

 

It's always so hard to tell the whole story in a post like this and easy to feel like people just don't "get" it when they respond. I was frustrated and it had been a hard day when I originally posted though it would be unwise to walk back to far from the things I said above because in many ways they are accurate. Yesterday was a better day; today has been another hard one. 

 

So. My kids have not had evals of any kind. Part of the reason for this is that two of my sisters are OTs/Speech Pathologists. They do not think the kids are autistic. I do not think the kids are autistic. A piece of the puzzle that I did not mention above because I wanted to be broadly relatable and have learned to be careful about mentioning is that at they are all gifted (evaluated as such) and one is profoundly so . I am aware that a lot of gifted kids are twice-exceptional but with regard to autism I just don't see it. I see so many peripheral sensory issues that are often associated with autism but not the heart of autism itself. For example, my son was a toe walker, hydrophobic and had frequent hours-long meltdowns as a two year old. My daughter struggles with emotional control that sometimes prevents her from doing normal tasks and continually seeks and makes her own auditory chaos. The word that best describes her character is "relentless." Many of these qualities are found in the autistic population but both children are empathetic, very verbally adept and make friends easily. They intuitively understand and respond to social cues from peers and adults far better than I did at their age.  When I say they are gifted I recognize a broad spectrum of talents and abilities that can manifest as giftedness. In their case they are fairly "global". No one is a savant per se. The child who excels at math is also a reader and an excellent writer for his age. I think if I were dealing with autism I would see at least some symptoms that were either social or verbal. 

 

We have a great community here and I have many friends who homeschool young children but I can't think of anyone who would understand why our home can be so intense. I posted in large part hoping to find someone who understood. In my social group, kids who refuse food and have meltdowns post-toddlerhood are generally thought of as poorly parented. I'm so weary of doubling down and trying harder only to find that it's not enough. I think I was hoping to find someone to relate to.

 

PS-I can anticipate the responses so let me emphasize that ours is not an unusually strict or judgmental social set. Just families who are fairly consistent and thoughtful and who by and large reap the results of good parenting. Had I never parented kids who had sensory issues I myself might have assumed they were under-structured/under-disciplined.

 

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Don't even get me started on how NOT QUALIFIED an OT or SLP is to decide the ASD question. I'll rant and throw things and eat caramels and potato chips and get fat. 

 

Really, they SO are not. We got SO many wrong opinions over the years, and those WRONG OPINIONS in areas they were NOT QUALIFIED to speak to kept us from getting earlier evals, diagnoses, and intervention. Now it's MY fault that I listened to someone who was speaking out of field. I own that. But still, I'm just telling you you do NOT want to know how often these people are wrong. They're too close to the situation or they overestimate their expertise or they're used to what the school system identifies. In our ps, only kids ASD2 or 3 get ASD put as their disabling condition. Kids with ASD1 get NO IEP AT ALL in our district. That means that anyone who works there has an instantly skewed sense of what autism looks like, because they only hang with ASD2 and 3 all day.

 

I don't want to seem insensitive, but if it looks like you don't want to do anything with the information you're given, people won't respond. Your kids should have psych evals. You can go to the Hoagies' Gifted list and find a psych in a 3-5 hour drive hopefully who can do justice at sorting out gifted vs ASD vs. SPD. What you're talking about is so extreme, and the level of what you're dealing with is so extreme, it deserves to be sorted out.

 

And yes, that's why you're getting wrong answers from your community, because everyone has their impression of what it ought to look like. Our SLP, who specializes in apraxia and who sees ASD, CP, Downs, etc., every day, was like no, no, can't be. But one her sessions were basically ABA and two she was used to ASD3, totally non-verbal, walk up to you and touch you and flap at you and visibly autistic level 3. You're saying kids who are highly, highly gifted who are presenting with extremes. The likelihood of ANYONE in your local community EVER having dealt with that is scratch, nill, zero. If you walked into our ps, they would never have seen it. They haven't seen anyone like my ds probably.

 

No matter what, the answer to your question is Zones of Regulation. They use it irrespective of labels (ADHD, gifted, ASD, SPD, NVLD, etc.) If your relatives are in these fields, why aren't they pointing you to these things?? People who work with a lot of autism and SPD and whatnot get trained in these. You can get trained. 

 

A Concept to Foster Self-Regulation & Emotional Control - Welcome

Socialthinking - Home

 

If you want help, reach out and take it. I've gone to a number of trainings now. My ds was pretty much a shocking bunch of work, like your kids, and we've gotten a lot better. 

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The last bit you typed about teaching independence describes precisely the way in which I have tried to teach it. And yes, HARD. Though in the long run I have seen progress.

 

It's always so hard to tell the whole story in a post like this and easy to feel like people just don't "get" it when they respond. I was frustrated and it had been a hard day when I originally posted though it would be unwise to walk back to far from the things I said above because in many ways they are accurate. Yesterday was a better day; today has been another hard one. This is so, so common with 2e kids. You think it's better, and then it's not. You are sure something is up, and then they seem to act like other kids long enough that you wonder. The fact that you work this hard and have such inconsistency is a huge flag that something is up. You know SPD is part of it, but there could be more. 

 

So. My kids have not had evals of any kind. Part of the reason for this is that two of my sisters are OTs/Speech Pathologists. They do not think the kids are autistic. I do not think the kids are autistic. A piece of the puzzle that I did not mention above because I wanted to be broadly relatable and have learned to be careful about mentioning is that at they are all gifted (evaluated as such) and one is profoundly so . I am aware that a lot of gifted kids are twice-exceptional but with regard to autism I just don't see it. I see so many peripheral sensory issues that are often associated with autism but not the heart of autism itself. For example, my son was a toe walker, hydrophobic and had frequent hours-long meltdowns as a two year old. My daughter struggles with emotional control that sometimes prevents her from doing normal tasks and continually seeks and makes her own auditory chaos. The word that best describes her character is "relentless." Many of these qualities are found in the autistic population but both children are empathetic, very verbally adept and make friends easily. My son made friends pretty easily at your kids' ages (and has friends now as well as a young teen). He is also empathetic and very verbally adept. His verbal chaos turned out to be stimming. They intuitively understand and respond to social cues from peers and adults far better than I did at their age.  When I say they are gifted I recognize a broad spectrum of talents and abilities that can manifest as giftedness. In their case they are fairly "global". No one is a savant per se. The child who excels at math is also a reader and an excellent writer for his age. I think if I were dealing with autism I would see at least some symptoms that were either social or verbal. 2e kids often fake it really well until they just don't anymore.

 

We have a great community here and I have many friends who homeschool young children but I can't think of anyone who would understand why our home can be so intense. I posted in large part hoping to find someone who understood. In my social group, kids who refuse food and have meltdowns post-toddlerhood are generally thought of as poorly parented. I'm so weary of doubling down and trying harder only to find that it's not enough. I think I was hoping to find someone to relate to. I've BTDT. I really do get it. 

 

PS-I can anticipate the responses so let me emphasize that ours is not an unusually strict or judgmental social set. Just families who are fairly consistent and thoughtful and who by and large reap the results of good parenting. Had I never parented kids who had sensory issues I myself might have assumed they were under-structured/under-disciplined. Yep! 

 

You are exactly where I was when my son was 8 and almost 9. In that one year, a lot of things became clear, and we got evals. The first one was barebones, and it was helpful. We just did IQ and a lot of talking with the evaluator. He was nice, but we moved on because our schedule was crazy, and it was impossible to accurately reschedule appointments with him (he needed a secretary). I know other people who stayed with him whose kids were similar to mine, and he did eventually realize that ASD was likely in the picture and redirect things that way. I think he would have seen that in my son at some point. The next evals were a little more in depth, some talking, some wondering, and then we heard someone give a talk about 2e kids that showed us a more nuanced look about what a potential diagnosis could look like on our son. We did more testing with the same psych and got more answers, the big one being ASD.

 

Fast-forward four years, and we learned more about both the gifts (this time, testing showed profoundly gifted IQ) and the deficits (language testing that showed some idiosyncratic needs in spite of overall high scores on a lot of stuff). My son's verbal section of the WISC was amazing...and his highest area of deficit. Really, the IQ covers up a lot. Kids with gifted language scores can still have big problems--they just hide it better. He doesn't seem language impaired until you try to do certain things with him. 

 

Anyway, it ended up being ASD. At first, people thought it was nuts. Then they didn't so much. That year from 8-9 was a big deal.

 

I really do understand where you are, but you should consider how the suggestions here might be helpful to you. It doesn't mean that your kids have ASD. We can't tell you that. Much of what has been said here is more broadly applicable than just autism. It's really hard sometimes to see how they might, but that doesn't mean that they won't help. 

 

I am leary of professionals who speak outside of their area of expertise also--it carries an added level of credibility without objective confirmation. Lots of professionals had lots of things to say about my son that weren't at all helpful and contributed to our waiting to have my son tested. At the time those professionals said them, they sounded helpful. That said, you really need to be careful about who tests profoundly gifted kids--that is why Hoagies' is recommended as a place to look for professionals.

 

Zones is a good program. Retained reflex work is life-changing. Both are good for kids with SPD whether or not they have autism. 

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Yes, like Kbutton, the change we went through this year was from people saying "Are you sure??" to "Oh my lands". He had to get enough age that the difference from his peers was more obvious. I think they say that 9-11, something like that, is your most common time to be diagnosed with aspergers. And of course now it's gonna be ASD with support levels, but Kbutton is so, so right that for us there was a shift. We took SO much flack from people, and now everyone agrees. It became obvious over time.

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I am sorry I didn't have time to read everything and my children do not have the same set up but there are two areas I think would be awesome awesome awesome and so easy for you to implement. 

Kathy at Pyramid of potential has a morning DVD or download that is called something like building brains everyday. I didn't use this for my childs retained reflexes but I think she just take you through the top reflexes that tend to retained. Its very affordable like 20 dollars for the download and you could just do this each morning. You would spot quite quickly which retained reflexes each child has and it would be a very excise type way that you could deal with these without all the expense of testing. I think you have to commit to so many weeks to see the results but it would be something to research and watch some videos on. 

 

The second suggestion I have I am hesitant because I have preteen that is highly academic but she has sensory stuff. I am sure of it no test has ever showed up anything. one of my other children has some sensory stuff. His SLP recomended Integrated listening systems with combined exercises ( we did the exercise in the book plus retained reflexes plus swinging and basketball while wearing their awesome headphones. ) The company put me in touch with a family selilng their system so they didn't even make any money and I bought a program for under 1000 and committed to having my son listen to 45 minutes to 1 hour a day. This would be so easy to incorporate into your day with your kiddos. They could each take an hour and do different swinging and exercises for the first 15 minutes and then finish with art and other creative play/creative activities. I created a checksheet and as we finished each of the modules I just crossed it off  but  I only had one child so had one check sheet.   The next time we started where we left off. I have heard there are other programs but I have to say that  this system was awesome. You can pm me if you want more info but over time it made a tremendous difference. If I homeschooled it would have been a piece of cake but I afterschool so it was tougher to put the time in but HUGE and worth it. Then because I owned the system and encouraged my preteen daughter with the crazy high IQ because she has such high anxiety. She loves listening to the sensory motor while doing art. I noticed a huge calming sensory effect on both of my children but it took around 40- 60 sessions but wow what a difference. To further say great things about the company my headphones had the bone conduction speaker go out and they fixed it for 40 dollars even though I didn't buy it from them.  I have seen the systems on Ebay as well. 

 

These are the two things I felt made the strongest difference especially with my child who has no academic challenges but has sensory challenges. 

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My husband and I have thought carefully about and discussed the responses here. We want to do what is best for our children but we are just NOT sure that diagnosis for gifted kids with pure SPD is always beneficial or warranted. I am aware that some will disagree and I think each parent has to navigate these waters and advocate for their child in the way they think best.  There is plenty of professional debate about SPD, it's diagnosis and the efficacy of specific therapies and treatments. I am an exhaustive researcher and I have not ever read any thing to suggest that my kids have either ASD1 or ADP. They are just missing far to many important symptoms. I feel confident that you would likely agree if you met them. 

 

This is not to say that I don't want to do anything in my power to help them cope with their sensory issues and I will continue to do so.

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Yes, like Kbutton, the change we went through this year was from people saying "Are you sure??" to "Oh my lands". He had to get enough age that the difference from his peers was more obvious. I think they say that 9-11, something like that, is your most common time to be diagnosed with aspergers. And of course now it's gonna be ASD with support levels, but Kbutton is so, so right that for us there was a shift. We took SO much flack from people, and now everyone agrees. It became obvious over time.

 

Yup. Exactly this. It isn't until older that it really starts to stick out. Oldest was diagnosed at age 11. And yes, the high IQ hides SO much because they are constantly "compensating" aka "translating". Which wears them out. 

 

Also, it is a total myth that kids with ASD are not empathetic. If anything, I find some of them are too sensitive, which leads to sometimes appearing closed off in order to handle it. But my son has always been especially sweet and empathetic with those younger or smaller than himself, a champion of the under dog, great with animals, etc. Only with same age peers did the relationship angle present itself, and even then not until older, because younger than that they could play rather than talk, if that makes sense. I mean, he's a boy. He'd find another kid that liked running or climbing or hitting a tree with a stick or digging and they would both do that. No social skills required, lol. When they get older and it's more about long conversations things got tricker. 

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I think most women here are exhaustive researchers. Most of us have kids that don't fit easily into boxes, and are dealing with a variety of issues. We come very different backgrounds, but many of us have been at this a while. I think you were given suggestions of a lot of good tools that have been helpful for many of us....and you offered up resistance to the suggestions.  

 

Personally, my thoughts line up with the others....2E + sensory + trouble with transitions & free time....you've got more going on than SPD.  From my own life, I was so used to things in my house being what they were that I no longer had a reference for what was normal.  It was only when I got evaluations that I really began to grasp how far out of sync we were with typical development.  You're not dealing with normal, but I don't think you have a good idea yet of all of what you're dealing with.

 

It's going to become glaringly obvious at some point....

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I think most women here are exhaustive researchers. Most of us have kids that don't fit easily into boxes, and are dealing with a variety of issues. We come very different backgrounds, but many of us have been at this a while. I think you were given suggestions of a lot of good tools that have been helpful for many of us....and you offered up resistance to the suggestions.  

 

Personally, my thoughts line up with the others....2E + sensory + trouble with transitions & free time....you've got more going on than SPD.  From my own life, I was so used to things in my house being what they were that I no longer had a reference for what was normal.  It was only when I got evaluations that I really began to grasp how far out of sync we were with typical development.  You're not dealing with normal, but I don't think you have a good idea yet of all of what you're dealing with.

 

It's going to become glaringly obvious at some point....

 

I don't have a normal house either and I am an exhaustive researcher. I read the testing many of you have done with out of pocket expenses like they are and I am in ahh. I too went the testing route but everything happens in its own time and a diagnosis doesn't usually give a clear path forward. Four kiddos is a lot to home school especially on the younger side so it can get hectic. We all feel overly protective of kiddos and it takes courage to post and listen to everyone's points of view. Most children do not fit into specific boxes.  Look at this as a journey keep reading and trying things. In our situation we are in a remote community and its near impossible to find good services that are affordable. I have consulted professionals by phone/email in Canada, Australia, New York and California.  Keep a log of things that work and things that don't . I have heard of ABC logging on this board. I need to look into this more. Also my kids bring out the worst in each other more than the best so you might want to observe your kids learning and behavior individually. Not all of them would need specific testing and each of them have different learning styles. 

Just remember two things

 

First you are the general in this army and they are going to follow you over whatever hill you choose! We all know if mom is calm it helps if we lose it the whole house burns down. 

Second the greatest reinforcement to learning you can give is a smile when they do something right. This will enforce the behavior you want. Do it often. 

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You might read the book Raising Lions. The author successfully worked with many children with diagnoses, from ADHD to ODD to autism (he says his methods don't work with severe autism). His suggestions have made a big difference in my home in just a few days. My kids have no formal diagnoses, but it appears that one is ADHD inattentive, one ADHD everything plus sensory issues, one has ODD tendencies, and one is, well, 4 and very dramatic. It's made the biggest difference with the one with ADHD and sensory issues who has seemed utterly incapable of self-control/impulse control/emotional control up until now. It is way easier to implement than Zones of Regulation too.

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Thanks for not kind of flying off the handle because I don't always agree. Forums can sometimes be so reactionary. We met with the OT last week and I and the kids LOVED her. She has gifted kids with sensory issues herself, has been working in OT specifically for sensory issues in one of the top 5 children's hospitals in the country for 20 years and came highly recommended by the faculty at our alma mater. She strenuously agreed that they were not autistic. She and my oldest daughter are going to start Zones of Regulation together tomorrow and she will also do an hour with my son (the resistant eater.) So good to have a little momentum here.

 

Has anyone tried a weighted blanket? One of the things that has been a constant for years is that my now eight year old is emotional and anxious about going to sleep. She doesn't resist bedtime but sometimes loses it when she gets up there. We have sat in the room actively managing her behavior while she goes to sleep since she was two. I wouldn't expect a weighted blanket to sweep all of that away but we've considered getting one to help. 

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My son doesn't have a weighted blanket, but if you think it would work for you, consider a body sock or a squeezy shirt or something of that nature as well as or instead of the blanket. We thought my son needed weight, but for him, it's just as much (or more) about pressure. I made a homemade weighted vest, and he thought he'd like it. He didn't really care for it. He actually preferred squeezing with a small amount of added weight. I didn't have a specific resource for something squeezy, so we would take folded bed sheets and strap them to his chest and back with a long ace bandage---the ace wrap was just enough tension to make him feel that squeeze. Some kids prefer a weighted wrap, lap blanket, etc. vs. a large blanket that covers their body. They even have weighted stuffed snake toys that kids wind around themselves.

 

He did like deep pressure combined with quite a lot of weight after vestibular input during OT. Once OT stabilized his vestibular system and his fight or flight, he's not had that deep craving. He still likes some pressure and a little weight, but it's no longer a necessity.

 

This catalog has a lot of options: https://funandfunction.com/

 

 

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