Hi. So glad to find this forum and very helpful that there's even a suggested introduction. In brief, I have a son who likely has sensory issues (as noticed by us, teachers, behaviorists, social worker - hasn't had an OT eval yet). We love our 5 yr old son, but he's tearing us to pieces, and I'm afraid of the whole realm of treatment because of the cost
1. What brings you here?
Kinda got into it already. My son was delayed potty training, likes to shriek, bang, twirl, spin (both himself and objects). Eats maybe 4-5 food items regularly and and every meal is a struggle. Always compulsively grabbing at things - in stores, in school, at the playground (although that has improved), needs to touch us and others all the time. Falls out of his chair; crashes into things; doesn't sit so much as writhes halfway in and out of chairs, sofas. Still has to co sleep with my wife, or if she wakes up, he does too and has to find a warm body.

3. Share a little of your journey if you'd like.
Some days I just want to collapse. My wife is coping with an illness and my son exhausts her. Domestic hell ensues. My workdays get cut short because I'm always leaving early to go help at home. Almost lost my job last year. All we do is work/childcare/work/childcare. My son just won't stop. Like he's driven by a motor that won't turn off. After getting behavior counseling and a special social skills playgroup as well as neuro-developmental pediatrician's evaluation, we fell short of the criteria for an IEP because they say he's performing at his grade level. I feel we were sold a bill of goods when we were told we could get a 504. Apparently we can't get OT services in school.
Bright spots: my son was doing ok in kindergarten but since the holidays, it's like he was 3 again. Potty accidents, running around the room flapping his hands and singing a manic song to himself.

We're so scared of the therapy because it costs a fortune and we just don't have it. The only message we get from OT's is "we don't take insurance." I'm angry because neurologists taken insurance; why can't they? We devoted ourselves to trying to be with our 2 kids (we have one younger) in their early childhood but my wife and I have to work to catch up from the stay at home period. My son's school is great in that they've worked with him a lot and the teacher has said she has a soft spot for him and thinks he's brilliant.
4. Is there any immediate help you need?

I don't see any light at the end of the tunnel and my son just started getting worse after a first half of kindergarten that went well. I'm lucky if I change pants two times a week or remember to brush my teeth.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?
SPD does run my life, my wife's life, my younger daughter's life. I almost want to cry when writing about it. As awful as it sounds, I'm almost jealous of parents kids with a more severe diagnosis because at least you get benefits for it. How messed up is that?
My son is so wonderfully curious, talented in art, construction, math, languages. But it's like he's vibrating himself off of his own axis 80% of the time.

6. What do you like to do in your spare time? Any hobbies or interests?
I had hobbies. So did my wife. we don't anymore.

I just basically wrote a similar post to yours. Its my first hour on this site and I'm crying reading your post. It echos the hopelessness I feel for my 4 year old and the exhaustion we live in. I'll follow your post to see what people say to help.

Thanks so much. Just one voice is all I needed. I'm reading your post now

(02-03-2015, 06:17 AM)ashersmum Wrote: I just basically wrote a similar post to yours. Its my first hour on this site and I'm crying reading your post. It echos the hopelessness I feel for my 4 year old and the exhaustion we live in. I'll follow your post to see what people say to help.

I feel for you, I came searching here nearly in tears. I'm a little saddened there aren't more people posting on these forums but I look forward to sharing what we know, what we've done and maybe some ways through the madness. One item of note the schools will not officially recognize SPD as it is not in the DRM currently, therefore they will not give 504 or other Special Ed w/out diagnosing ADHD. ADHD IS NOT SPD and even if the psychologists know there is a difference they are only authorized in schools to treat ADHD. They will refer to OTs of which often cost a lot and only give coping techniques (which some do work). Anyhow, I'll be posting on the main forms soon and hopefully can give some insight from our situation.

@Zelexis - thanks. It's a long tough road. It just gets so bad sometimes. Like we both feel ourselves degenerating into these drill sergeants because in the depths of exhaustion, lack of skills, our son gets yelled at a lot. I hate it, but now even I'm doing it. Good thing was that the developmental pediatrician who first saw my son has asked for a follow up, and she's been very good about making the diagnostic verbiage more 'medical' than is warranted, because she knows that in school services depend on it. It just takes so long to get another appointment.

(02-03-2015, 02:51 PM)Zelexis Wrote: I feel for you, I came searching here nearly in tears. I'm a little saddened there aren't more people posting on these forums but I look forward to sharing what we know, what we've done and maybe some ways through the madness. One item of note the schools will not officially recognize SPD as it is not in the DRM currently, therefore they will not give 504 or other Special Ed w/out diagnosing ADHD. ADHD IS NOT SPD and even if the psychologists know there is a difference they are only authorized in schools to treat ADHD. They will refer to OTs of which often cost a lot and only give coping techniques (which some do work). Anyhow, I'll be posting on the main forms soon and hopefully can give some insight from our situation.

I suggest looking for a behavioral therapy clinic. Most large medical centers will have them (it may be a drive depending upon where you live). They gave us great strategies and we are rarely yelling anymore (which was getting pretty bad). Some keys we took away were 1. Each parent spends time with the child (~15) mins a day where the child chooses the activity, parent narrates play and praises the child. 2. Throughout the day you give 3 x the positive comments vs the 1 x commands. Ex: "I like how you're sitting quietly at the table x" ... and 2 other comments similar about their good behavior (no matter how brief the behavior). 3. Use Active Ignoring techniques, by giving them praise frequently you're giving them a spotlight. When they are making odd noises, yelling, shrieking etc physically remove your gaze of them, completely ignore them. 4. Give 1 command at a time and be firm, do not ask it as a question. I.E. "I need you to get your shoes and put them on" instead of "Can you please go get your shoes on?". By saying the command like a question the kid things they have an option to NOT go get their shoes, telling them in a simple command is more effective. There are other techniques but these were the key 4 that we still use frequently.

A couple things to note: Try each technique consistently for 1-2 weeks (don't stop). Add a new one every 1-2 weeks, keep doing them so they become your new routine. Kids behavior will often get WORSE before it gets better mostly due to you changing up your discipline routine so they realize their old tricks for attention aren't working so they will act up more. Don't let that dissuade you, keep using the techniques. Also, praise them frequently most people don't realize how many commands they give their kids in a day (we didn't). The goal is to ramp up positive interactions instead of negative ones.

Lastly, after you find which of the above techniques work for you share them with your children's care/school providers that way they know what does /does not work.

Thanks, Zelexis. I think the approach you recommend makes a lot of sense. We're still struggling to find a place that will give an OT eval under insurance. We have had a family therapist for 1.5 years and that's helped us through some major issues. While our son's sensory issues are a big part of why potty training was so hard, a good therapist was able to reach him and take advantage of our son's ability to communicate well. He told our therapist his fears, and that was part of overcoming the issue.

I used your tip of "I need you to get dressed" this morning. I had to say it a lot, but it worked

1. Visual aids tend to help some kids a lot. Processing sound is a lot harder than processing vision for a lot of people, especially processing sound and then converting that to what you are supposed to do. Write up picture charts of routines, what do you need to do to get ready in the morning? Draw out pictures, post it on the wall, you have a reference there for looking at in the morning.

2. If he needs to spin, bounce, etc, then find a way to have him do that. Get a mini trampoline, and bounce in the morning, and then spin together (maybe on one of those little spinny wheel things), before you do something important. Get the spinny-needs out. They are needs, fill them. Don't expect them to stop, do provide a trampoline instead of an ill mother to compress his joints against.

3. You have hobbies. You have other things you do besides caring for your son. I don't care that it doesn't feel like it at the moment, you do. FIND some way to do that. Find some way that a grandparent of your son takes care of him for an evening and you and your wife can spend it together. Find some way that an aunt can take care of him for an afternoon, and you can work on a hobby. If you are this stressed, it is absolutely necessary, that you find some way to get a break, sometimes. Not necessarily frequently, not necessarily much, but caring for people is stressful, and if you cannot remember anything besides caring for someone, and are stressed and upset and think that's your entire life - even if you love that person - you need to take a break for yourself before it starts turning into a problem. It doesn't need to be right now, you can find a way so that while he's at school you're doing other things even (even if that means taking vacation time). Just, remember to care for yourself too. It's really easy to forget in a situation like this, and with the amount of stress you are showing here, you need to dispel it and remember that you do have other things, no matter how much your son is awesome as well as a struggle.

4. Have you checked other OTs for ones that take insurance? I went to two OTs and they both took my insurance, however I've seen others that won't take mine. the one I'd love to go to doesn't take mine, but takes others.

5. How much research about SPD have you done? Would it help to research more and do more at home stuff? There are a lot of things that can help - like the simple suggestion of getting a trampoline.

6. How long was it since the holidays? How much of this is change of routines? How much of this is needing mental stimulation? Mental stimulation could help, he could be bored in certain ways and unable to express it. Routine changes are frequently a challenge. Home could also just be sensorily a more challenging place.

Wow. Thanks so much for a detailed response. I like the visual approach a lot and I'll try that. My son loves to draw, and it's a form of relief for him - to draw or make things, no matter how haphazard they seem. He expresses himself by making stuff. He asked for a schedule like the one they have in his kindergarten class so I asked the teacher to take a photo so we can copy it and make our own.

And thanks for the suggestion to catch a break but we have no nearby relatives, (only overseas and I have no family) and we're on a financial treadmill too. It seems like I just can't work enough and all I do is childcare; same for my wife. So neither of our careers are really thriving. It all seems like such a catch-22 right now. My son and wife need to get better, but the time and finances just aren't helping right now. Feels like drowning a lot of days.

(02-10-2015, 05:59 PM)Tuttleturtle Wrote: 1. Visual aids tend to help some kids a lot. Processing sound is a lot harder than processing vision for a lot of people, especially processing sound and then converting that to what you are supposed to do. Write up picture charts of routines, what do you need to do to get ready in the morning? Draw out pictures, post it on the wall, you have a reference there for looking at in the morning.

2. If he needs to spin, bounce, etc, then find a way to have him do that. Get a mini trampoline, and bounce in the morning, and then spin together (maybe on one of those little spinny wheel things), before you do something important. Get the spinny-needs out. They are needs, fill them. Don't expect them to stop, do provide a trampoline instead of an ill mother to compress his joints against.

3. You have hobbies. You have other things you do besides caring for your son. I don't care that it doesn't feel like it at the moment, you do. FIND some way to do that. Find some way that a grandparent of your son takes care of him for an evening and you and your wife can spend it together. Find some way that an aunt can take care of him for an afternoon, and you can work on a hobby. If you are this stressed, it is absolutely necessary, that you find some way to get a break, sometimes. Not necessarily frequently, not necessarily much, but caring for people is stressful, and if you cannot remember anything besides caring for someone, and are stressed and upset and think that's your entire life - even if you love that person - you need to take a break for yourself before it starts turning into a problem. It doesn't need to be right now, you can find a way so that while he's at school you're doing other things even (even if that means taking vacation time). Just, remember to care for yourself too. It's really easy to forget in a situation like this, and with the amount of stress you are showing here, you need to dispel it and remember that you do have other things, no matter how much your son is awesome as well as a struggle.

4. Have you checked other OTs for ones that take insurance? I went to two OTs and they both took my insurance, however I've seen others that won't take mine. the one I'd love to go to doesn't take mine, but takes others.

5. How much research about SPD have you done? Would it help to research more and do more at home stuff? There are a lot of things that can help - like the simple suggestion of getting a trampoline.

6. How long was it since the holidays? How much of this is change of routines? How much of this is needing mental stimulation? Mental stimulation could help, he could be bored in certain ways and unable to express it. Routine changes are frequently a challenge. Home could also just be sensorily a more challenging place.