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#1 of 52 Old 10-22-2009, 12:21 AM - Thread Starter
 
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I'm pretty sure my 4 year old has SPD. I've read out-of-sync child and she seems to move between sensory seeking and tactile devensivness, also some auditory processing issues, has trouble in crowds, does not like touchh unless she initiates, doesn't like to make eye contact in public, lots of tantrums.
She recently started OT and waldorf kindergarten (with me staying the whole time), and seemed to love it at first but after a couple weeks now refuses to go and starts to have an anxiety reaction to being pressured that can blow into a ginormous tantrum so we have backed off and canceled those activities for now. I guess I just need to hear others who experience similar things. A lot of my friends feel like I should just be able to "make her" do things or that I am coddling her too much or don't understand that when I say she "will not stay with anyone but me, my dh or my mom" I really mean that and its not me being an overly cautious mother. Some days I just feel so sad for dd.
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#2 of 52 Old 10-22-2009, 09:02 AM
 
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We are in the beginning stages of sorting through my 4 year old's sensory issues, too. She has a lot of anxiety around social situations, too. It's her biggest challenge at the moment...it's so difficult having to cancel activities, leave early, head off meltdowns....like walking on eggshells all the time. I feel so sad that things are so different than what I had hoped for her. Feel free to PM me any time you want to chat. I also will say the Yahoo group Sensory Street : http://health.groups.yahoo.com/group/SensoryStreet/ is full of supportive mamas who understand.
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#3 of 52 Old 10-22-2009, 09:40 AM
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My son has diagnosed SPD. He is mostly a sensory seeker but has some defensiveness as well. He also doesn't like crowds and gets very overwhelmed and tantrumy in large crowds. He doesn't like people "coming at him". So if another child comes running over or an adult swoops at him for a hug they are likely to get slugged.
He is rough, unpredictable, immature and I do make concessions for him that I don't make for my other kids. For instance, he literally gags and dry heaves at the smell or taste of most vegetables so I don't make him eat them or have them near him at the table. Of course I have had comments about not making him eat certain things. I don't care what others think...I do what I think is best for him.
He goes to OT 2x/week.
We also follow a sensory diet at home - lots of jumping, swinging and deep pressure.
It has helped. He is in a regular kindergarten (with an IEP) and is doing great.
Take care,
Kristin
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#4 of 52 Old 10-22-2009, 11:27 AM - Thread Starter
 
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One of our biggest challenges is getting dd to wear different clothes. She wore one dress (sans underwear and socks) for 2 months. She tried to change clothes at numerous times and someitmes I think wants to find something else but it ends in anxietyh and frustration. She did finally change dresses, 2 infact in one week which is HUGE for us but now she is "stuck" again on a certain one. No pjs, sleeps naked at night. I am trying to get her to wear tights because it is getting really cold out and since she doesn't wear underwear I feel she needs something on but everyhthing as she says "has a problem with it". sigh.....
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#5 of 52 Old 10-22-2009, 11:59 AM
 
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DS is nearly 3.5 and we just got the diagnosis of SPD on Monday. He's a fluctuating sensory seeker as best as we can tell. We're just starting the process of trying to get OT services through the school district. DS isn't in school yet, obviously...aside from the fact that we're homeschooling, he's still really little, but he's in the halfway place between Birth to Three services and "mandatory" school enrollment age, where the school district is supposed to provide home services for him if their own evaluation agrees with the doctor's. It's a little intimidating.
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#6 of 52 Old 10-22-2009, 04:42 PM
 
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Originally Posted by Qerratsmom View Post
She recently started OT and waldorf kindergarten (with me staying the whole time), and seemed to love it at first but after a couple weeks now refuses to go and starts to have an anxiety reaction to being pressured that can blow into a ginormous tantrum so we have backed off and canceled those activities for now.
Would it be possible to keep OT but drop preschool?

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A lot of my friends feel like I should just be able to "make her" do things or that I am coddling her too much or don't understand that when I say she "will not stay with anyone but me, my dh or my mom" I really mean that and its not me being an overly cautious mother. Some days I just feel so sad for dd.
I understand.

My 13 year old DD has sensory issues. Sometimes it's very challanging to figure what really works for my DD, and parenting techiniques that work just fine with my other child are not appropriate for her at all. I've given up the idea that parents of regular kids will understand at all. Most of my friends either don't have kids or have a child with special needs. I've noticed that I'm not very good at friends with moms who only have typically developing kids.

If it helps, we went through a difficult phase when she was about the same age as your DD, but then we went through several years of childhood where things were fairly calm because we had kinda figured out what worked for her.

Now it's tough again because adolescence is a whole new thing. But there were several years where things were calm.

My DD is currently seeing a counselor and her counselor has pointed out to me that it isn't helpful to my child when I feel sorry for her. She needs me to see her strengths and believe in her. This is very tough for me and I'm not there yet, but I though I would pass it along as a goal.

but everything has pros and cons  shrug.gif

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#7 of 52 Old 10-22-2009, 09:26 PM
 
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I would not drop OT. Especially if she is sensory seeking, OT should be a treat for her because she can get her sensory needs met there in a way it is hard to do anywhere else. If she hates it, it may be that the therapist is pushing her defensiveness too much while not "rewarding" her with activities that meet her desire for sensory seeking. My child (who I'd describe just the way you do yours) loves OT. Children should love OT!

And while I have learned so much from Waldorf education, and have found its principles to be of tremendous value to my family, I imagine it is a hard place for a sensory-seeking child. I think the philosophy can be a little rigid for those with sensory issues. My SPD child would not do well in a Waldorf environment. She is, however, responding tremendously well in a Montessori school where I've done a fair amount of SPD education with the teachers.
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#8 of 52 Old 10-23-2009, 02:31 PM
 
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OP, I'm 99.999% sure that my 5.5 y.o. has SPD. We see the dev ped next week.

The year he was 4 (and misdiagnosed with ADHD) was a rough time for us. Preschool was only possible with a 1:1 aide, and I'd come in at pickup time and find him hiding under the table, etc. We tried four different preschools between the ages of 2 and almost-5, and I wish I had not been so fixated on that goal.

OT is a different story - he made HUGE strides in group therapy, and is now receiving individual therapy. Even if you carry her in screaming, I would persist with the OT. I think that many (most?) kids with SPD simply won't ever get better without OT, and that group therapy is hugely useful for those kids who have their sensory meltdowns in group situations (like the preschool classroom, heh).

The sorrow you're feeling is something that you are probably going to come out on the other side of. At age 4, with her issues already identified, she has so much potential to improve! So don't feel guilty about feeling bad for her. As long as you are being proactive (OT, sensory diet at home, always keeping an eye out for activities that will "stretch" her sensory capacities in a way that she can tolerate) - then you are acting positively, and it's not necessary to attempt to squash every negative emotion.

Hugs to you, mama! There is light at the end of this tunnel.
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#9 of 52 Old 10-23-2009, 07:22 PM
 
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I've been thinking about maybe add/adhd, a light form of asd, but couldn't be sure for a need to pursue a dx and I think/feel we've been right not to do so. Some people indeed pointed out some of his characteristic behaviour (severe tantrums, hyperactivity mostly) and suggested to have him checked. So far, we didn't. Also since things seem to be on track since a good while.

But, by now I AM SO ABSOLUTELY POSITIVE, without a single doubt, about youngest dealing with SPD, he is now 3y8m. The SPD checklist mentions so many things that are just HIM (both in sensory seeking and avoiding categories); I had to laugh so hard while taking it through, because of the recognition. Dh has to read it still, but he'll definitely have an 'aha' experience, too.

Some people say 'it's just kids/the age'. No, it's MORE than that, but you can only realise this when you have spent adequate and intensive TIME with him. I finally had some people say 'now I know what you mean with that' or 'now we know why you say you prefer not to take both children out on your own (meaning: it's hardly possible)'.
Others would say, maybe 'adhd'? but what strikes me is that he's not hyperactive ALL of the time, sure not, more like in certain situations (often in other or new environments and/or overstimulation situations, and/or when his 2y older brother is around) so there just must be another (environmental) factor playing a role when such busy unstoppable active behaviour shows.

He is truly over sensitive and finicky about certain (many) issues, and in other ways very sensory seeking. Things have to be a certain way, and it's often hard to figure out what he means, what's the matter etc.
Now I get his cues better but when I 'understand' what he needs I've had others commenting on a situation: 'how could you possibly KNOW that was what he needed?'.

Also, he doesn't like to be touched/kissed (sometimes not by mom and dad even!), more on his own initiative, and when he does he may kiss you so hard that it hurts. I'm so lucky to be extbf because for a long whilew it felt like the only time he would sit still on my lap (well not always still, BUT on my lap :-) and I hardly got chance to cuddle him apart from those sessions.

Lately he seems to be easier to deal with, more enjoyable. Much less freaky tantrums. Didn't need to use my earplugs for a long time :-). I think part of the 'change' happened because he can express himself better verbally, and sure because we learned better how to deal with him and his particular wishes, way of thinking, behaviours, habits.

We're not sending him to pre-school (yet), partly because things are easier and I am enjoying him so very much (more); especially when alone with me he's so easy going lately. But I hold my heart for putting him into pre-school. I truly fear he'd love it the first week(s) or so and then get trouble because of the way things work (or don't work) there and then having a major issue again so I do not want to push anything. It may very well go well too but at this point I don't feel it's worth to risk our present love and peace. And above all, he needs to be comfortable and happy, so we are happy as a family. Also him and ds1 are having somewhat less fighting lately and it's a break.
Things have been tough. I feel like we can breathe better at the moment, less tiptoeing (from us parents, meaning walking on eggshells), too.

We also looked into dietary imbalances/issues. At the moment started lactose free. Finding out if that has any effect. Later will probably try gluten free still cfr. possible sensitivity to this too. Also easier not sending to pre-school yet regarding elimination diets, since there he would be served 2 school meals.

What's an SPD diet if I may now?

I could have some support from other parents with SPD kid. For recognition and sharing experiences/ideas.

My sister and bil, when staying with us for 2 weeks, just couldn't grasp why I would deal with him the way I do and often saw it as giving in all the time, while for us it is just keeping him comfortable as much as possible, resulting in a better way of peace keeping too. So both beneficial for my ds and for family survival, lol. Also, they just couldn't get how I got to understand what ds2 needs when they just only could see the 'behaviour' and were obviously craving to correct (I wouldn't let that happen, much to their frustration, but I was frustrated by THEIR attempts to change my son's behaviour by force/'winning', which can't and won't be done!) without needing to find the source/reasoning/thinking behind it.

In fact by seeing what another person would want to do regarding 'teaching' or 'disciplining' my 'difficult' child made ME finally realise how much in touch I already got with my son, all learned out of experience in dealing with him over the years. I can finally learn to validate the positive changes in my parenting, through learning to understand my son. Even though I've had really hard times in dealing with him, I now know I learned lots and am still learning.

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#10 of 52 Old 10-23-2009, 07:31 PM
 
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What's an SPD diet if I may now?
I must have heard that term 50 times, thinking people were talking about a food diet, before someone finally enlightened me that "sensory diet" is a term for figuring out what your SPD kiddo's triggers and needs are and then making sure they have access to activities and tools that meet those needs. For example, crunchy foods (so yes, it could be a food), a trampoline, a tumbling mat, sensory balls, a soft doll to hug and squeeze, a quiet corner with some books and a blanket fort to block out the world for a while, etc. The trick, I'm finding, is figuring out what helps and when. At least with ds, things that help one time are exactly what he doesn't want another time! That's a big reason we're trying to find an OT to work with, to help decode his triggers and needs.
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#11 of 52 Old 10-23-2009, 08:59 PM
 
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qerratsmom, i HEAR you about the clothing hardships . my dd (3, SPD/AS) has had huge troubles with clothing. this summer we had a bit of a reprieve, but it seems the colder weather clothes have brought it right back out. just wanted to say my dd only wore the same 1 or 2 outfits for a while, and is naked every chance she gets. she's gotten better about keeping clothes on in public (except shoes), but it was BAAAAAADDDDD for a while. does your dd like footed sleepers? dd was willing to wear these every day for several months, and i just bought shoes a 1/2 size big to accommodate. also, TIGHT things help her - in the summer, biker shorts a size too small, and in the colder months, bodyskimmer tights (get them at a dance shop). i realized, too, that even though it seems crazy, even at 2 years of age, she had really strong visual preferences about clothing. i started letting her come with me to the store and pick out her clothes, and it really seemed to make a diiference - lol! anyway, good luck. it's a big game of trial and error - every day.
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#12 of 52 Old 10-24-2009, 12:39 PM
 
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I must have heard that term 50 times, thinking people were talking about a food diet, before someone finally enlightened me that "sensory diet" is a term for figuring out what your SPD kiddo's triggers and needs are and then making sure they have access to activities and tools that meet those needs.
Now I have a true AHA-moment! Lol. I didn't figure this out yet, thanks for informing me .

I think that's exactly what we've been doing: looking for things (material stuff, but also ideas) that may help him and appeal to him.

His HUGE need for INDEPENDENCE is also a major issue to keep in mind here.
A certain structure is what he follows and needs others to follow with him, too, but with a large marge of flexibility for very unpredictable new structures that seem to appear all of a sudden (in his mind, so for him it has to be that way and just can't be different AT ALL); trying to understand his experience of things is so totally needed to be able to follow his ever inflexible and (contradictorily) ever changing ways. So lots of fexibility required from us parents. If you can still follow? I think I've been wording it more clearly before but this is the best I could come up with today.

Clothes, and foods are also HUGE issues here. Lately a bit better. Because we discovered how those things work for HIM and by letting go much of how we feel things need(ed) to be done. Lol, loooooooooooooooooooots of letting go!
What frustrates me every single day is him taking off his socks and shoes x times a day (well, true, he's going in and out all of the time so it's a good habit in that regard) and me needing to remind him where to wear them and where not and to have him wear shoes when outside etc. Always taking of his trousers and underpants when going on the potty, walking around half-naked if I do not watch out, him requiring me to re-dress him (at least, his lower body) x times daily is draining. taking jacket of or not wanting to wear x or y (suddenly), or needing to wear RIGHT NOW and zipper MUST BE CLOSED (but not aal the way up)... Finding out what is the 'trouble' with certain clothes on certain days, leaving lots of choice/independence to him regarding clothes.
Food, same way. Has literally periods of wanting to eat the same foods with same spoon in same plate and no not that piece of bread but THAT one etc. that would make any non-flexible non-letting-go parent go totally nuts and angry, lol. (Not that he never made me angry/frustrated, to the contrary :-( )

And related to all of the above so many issues we've had about CHANGES AND TRANSITIONS (eg winter/summer clothes, going somewhere-leaving a place, pyjama's-daytime clothes, haircutting, ...)

Not wanting me to SING (true, I can't really, lol). Then again, sometimes I anm allowed to sing (mostly bedtime).
But loving dancing/bouncing/spinning with me or alone. Then again, sometimes resisting this too. He has certain preferences that can nevertheless be different on different days or in different situations. Hard to follow.

Getting hyperactive and excited to the point of (almost, as I learned to remind him not to) vomiting.

He also has a much attached to 'lovey' that now looks like it survived a war! Fyı: it WAS a frog.

I can go on and on, also about his being such a wonderful child, but ahum a bit, so to say, 'unusual'. He LOVES to take part in activities, is VERY curious about watching things being done by adults and likes to take part in it/mimic.

I'd LOVE to hear more of your stories.

I think in some way it's also much fun having such a child as ours, since you run into things that just need you to change your thinking and make you to become more flexible, appreciative, creative as a parent and person.

With ds 1 it is mostly like 'you KNOW what your child needs'. With ds2 it is more like 'you LEARN what your child needs most'.

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#13 of 52 Old 10-24-2009, 02:05 PM
 
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I'm pretty sure my 4 year old has SPD. I've read out-of-sync child and she seems to move between sensory seeking and tactile devensivness, also some auditory processing issues, has trouble in crowds, does not like touchh unless she initiates, doesn't like to make eye contact in public, lots of tantrums.
Based on this description I would definitely keep OT at all costs. She NEEDS OT. Kindergarten isn't necessary, but OT is. The tantrums are part of the SPD - she has trouble self regulating, and gets easily overstimulated. The 'problem' with SPD kids is that they can't then regulate back down. They're 'stuck'. OT, from a skilled provider, can really really help.

OT was essential in helping our ds get himself regulated, be able to accept a different range of clothing, be able to do basic motor planning that other kids do naturally. I would have given up our lovely Reggio Emilia inspired K for OT. He's 8 now, and doing very well. He's still sensitive, but not hypersensitive. Now that he's 8, he's also getting the cognitive ability to recognize what sets him off, and to recognize his body's fight/flight mechanism. He's got a ways to go, but I'm hopeful that he can, and will, be OK.

For your dd, note too that when she starts OT, because her system will be being reorganized, things aren't going to get all rosy in an instant. They may actually be 'worse' because her system is more unstable. This period of disequilibrium is NORMAL and will pass. It's a pain, but it will pass.

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starts to have an anxiety reaction to being pressured that can blow into a ginormous tantrum so we have backed off and canceled those activities for now.
Have you thought about having her assessed/treated for anxiety too? Anxiety and SPD often go together -- essentially both are issues with self-regulation. We had ds assessed for anxiety this summer. And while I wasn't too pleased with the overall approach the psychologist told us to take (do some home study and call me back), it did help give me some strategies for thinking about things/talking to ds. At her age, I would expect play therapy to be the approach someone would take.


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A lot of my friends feel like I should just be able to "make her" do things or that I am coddling her too much
They clearly don't have an SPD kid. I could no more have made ds go barefoot before he got OT than I could have made him fly.

Heck, my dh (who has the same sensory issues, only untreated because they were unknown 35 years ago) NEVER ever ever goes barefoot. It's an issue at the beach. It took me until ds started OT to realize that the reason dh sits down and spends 10 minutes cleaning off his feet and putting his socks and shoes on when we leave the beach is NOT because he's an insensitive brute who doesn't want to deal with changing/helping 2 sandy tired kids, but because he NEEDS to have his socks on.

I think it really helps to realize that this is not willful behavior. This is behavior that is either (a) meeting a sensory need or (b) reacting to sensory overload with fight/flight.

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What's an SPD diet if I may now?
As someone else said, it's a diet of activities that help meet a child's sensory needs.

My favorite SPD books:
Sensational Kids - it has a nice section at the end of each chapter about things you can do to help your sensory kid and provide a good sensory diet.
The Out of Sync Child - a quicker read than Sensational Kids - good for an introduction of what's going on.
The Out of Sync Child has Fun - good for sensory diet ideas.
Raising a Sensory Smart Child - good for sensory diet ideas and particularly good for parents of younger children (under 4), since the Out of Sync Child and Sensational Kids tend to focus on ideas for school-aged kids

My favorite anxiety book
Freeing Your Child from Anxiety

The 'good' news about SPD is that it's treatable, the treatment is FUN for the child, and it is something that most parents can feel comfortable with because there's no medication involved. I can't tell you how glad I am that ds got OT. It's made him so much more comfortable in his body. So much better able to deal with stimulation. He's still sensitive. He's still prone to anxiety. But he can deal with it with our help.

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#14 of 52 Old 10-24-2009, 02:49 PM
 
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They clearly don't have an SPD kid. I could no more have made ds go barefoot before he got OT than I could have made him fly.
that: Lynn is right about therapy. Having a GOOD therapist can really help. It's important to find the right therapist...one that both you and your DD like.

For us, having the right therapist (in our case, an excellent feeding therapist) meant the difference between my DS eating food and not eating at all.

The other things that I've found help him are as follows:

Making sure he's getting enough sleep for his needs. That means getting him down earlier than he'd like, usually....because he's typically tired enough whether he knows it or not.

Finding his food sensitivities and making sure he doesn't eat those foods. Yes, there are truly foods that make his sensitivities worse. It's taken some trial and error, but I've found several foods that cause issues for him.

Making sure he gets a multivitamin, since he's not eating really enough variety of foods to get the broad nutrition he needs. I notice a big difference if he doesn't get his vitamin for a few days. I also give him a DHA supplement (it's not in his regular vitamin). This seems to help as well.

Using a therapy brush (properly)...an OT can show you the brush to use and how to use it. This is very helpful for tactile sensitivities.

Making sure he gets enough physical activity. Sensory based physical activities are especially good. An OT can guide you there as well.

Generally we avoid things that truly bother him, but sometimes he just needs me to push his limits for therapeutic purposes. Those times are limited though, but I find that sometimes he needs a little push here and there. Sometimes it's a tough call as to when to push a bit and when to leave it alone. Sometimes by pushing a bit I can get him to learn to tolerate something better (to his own level of toleration, but still not the same as a child without SPD). This has nothing to do with either coddling or forcing. Really, it's just learning what your child needs at any given time.

When all of the above are okay and his sensitivities start getting worse seemingly "out of the blue"... then usually he's getting some sort of illness. Any kind of illness just pushes him over the edge, and I just have to be more understanding and supportive during that time.

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#15 of 52 Old 10-26-2009, 12:58 PM
 
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One of our biggest challenges is getting dd to wear different clothes. She wore one dress (sans underwear and socks) for 2 months. She tried to change clothes at numerous times and someitmes I think wants to find something else but it ends in anxietyh and frustration. She did finally change dresses, 2 infact in one week which is HUGE for us but now she is "stuck" again on a certain one. No pjs, sleeps naked at night. I am trying to get her to wear tights because it is getting really cold out and since she doesn't wear underwear I feel she needs something on but everyhthing as she says "has a problem with it". sigh.....
Have you ever figured out a pattern to the things she has a problem with...or the things she is okay with? If you have trouble finding comfortable clothes, do you think a seamstress could consult with you and come up with something comfortable for her?

My DS has issues with tags, so I cut them out of the clothes. Then I write in permanent marker inside what the clothing size is (really the only reason to have a tag anyway). He has issues with "hard" clothes, like jeans and stiff pants. He won't wear shirts with collars. He also doesn't like synthetic clothes. I use those basic guidelines to buy him clothes....basically it's cotton shirts with no collars and nothing inside that will rub on him (like the back of an embroidered decoration). We only do cotton sleepwear that I get in a size or two larger than he currently is so it's not too tight. I only get him soft knit pants and shorts. I could make him all his clothes, but I really don't have the time for that. So, as long as I can find something in the store for him I'm okay with that.

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#16 of 52 Old 10-26-2009, 04:19 PM
 
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Tell me it gets better.

We dropped ds's last organized activity today. It's a homeschool co-op that dd's been in for going on four years now. DS has been going since birth -- he knows everyone, likes everyone, likes the activities.... But it's the group thing. No matter who it is or how fun the activity, he gets in a group setting and it's just overwhelming and he can't handle it. One by one we've stopped signing him up for things and have been just doing them at home with him instead. This was the last. DD will still go, but ds and I will play together outside the room instead. I'm frustrated for him, that he's missing out on this, and I'm frustrated for me, that it's one more activity I can't do with dd anymore.

I told a friend today that he had his evaluation and we got a SID diagnosis. First words out of her mouth: "Really? I can't see it." She lives up the street from us and has known ds most of his life. It's so hard to explain that yes, all kids do the same things he does at times -- not sleep, get frustrated, tantrum, do headstands, run, jump, flap their hands, get too distracted to go potty, etc. But he does it frequently and intensely. It's different. You may not see it when you spend half an hour playing outside with him on the swingset, but if you spent a week straight with him, day and night, you'd see it. She probably didn't mean it the way it sounded, but I felt like a paranoid fraud trying to explain SID to her, when I'm not even sure I understand everything yet.

Throw in several bouts of screaming, kicking, a tantrum that had the director of the program come running, looking for the kid who was hurt (he wasn't, just mad), carrying him and spinning him until my back hurt, and I'm just tired. Frustrated because I feel like I can help him in the moment, but I can't figure out how to help him not reach that point of frustration and feeling overwhelmed in the first place. We have a meeting with the school district tomorrow to see if we can get OT for him through the school system. It can't come soon enough, and I'm afraid they're going to say we need to do another evaluation, set up an IEP, and that it may take months. We've already waited so long. Three months just to get the first evaluation. Today he told me he hates groups and classes are stupid. He's THREE and he sounded like an angry and disillusioned teenager. That's not good. It's not like he's an overscheduled, hothoused kid, either. "Classes" are things like a one hour, once a week playgroup that does a story and a craft activity with a lot of free play time. Stuff he loves to do.
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#17 of 52 Old 10-27-2009, 06:42 AM
 
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earthmama. I can relate to so much of what you wrote. We've dropped so many activities....I feel like it's a cycle-we drop or opt out of activities because of anxiety, but then she doesn't have the opportunity to work through her fears because we are in less and less group situations. Our EI person is pushing for pre-school (with support from her in the school in addition to OT and play therapy), but I just don't know. It's so hard.
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#18 of 52 Old 10-28-2009, 12:42 PM
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Oy, I'd join.

We've had quite the beginning of our day. Winter clothes are not kind to us. DS HATES socks, pants that are longer than his ankles, blankets with static, shirts with collars or buttons, zippers that touch him anywhere. I can't dress the poor kid. At least he loves being wrapped up really tight in a blanket so he can keep warm, but he can't stay on the couch all day! He must get outside and run and jump and fall down and crash if he's going to be a happy kid.

And the sleep is ridiculous. He can't fall asleep, even when he's exhausted. Doc recommended some melatonin, but he fights through that too!

And it seems like some days, his problems don't even exist. He is like a totally normal kid with nothing that bothers him. And then I think I must be crazy, and stop pushing forward with the stuff that we need to do, like calling the dev ped so we can actually get something going for him. And then today we're back to square one.

It doesn't help that my family all thinks I'm nuts. I see so much of my sister in DS, so my mom keeps going on about "it's just a phase", and I remind her how often she cried and fought with my sister all through her childhood. That can't be normal. MIL is the same way because DH was a difficult kid. Oh yeah, it's totally normal for them to have raging tantrums for hours, hitting and kicking, then hitting and kicking themselves, and then galloping around in a circle until they fall over.

And what am I supposed to do about his hygiene? I can't cut or brush his hair, cut his fingernails, clean his face, or brush his teeth. I just know he's going to have cavities, of course, this all assumes that he lets the dentist into his mouth without passing out from panic. I don't even dare to try yet.

This morning he told me he was scared of his boots. I think because the tag was bothering him, but he was melting down over it. Playing in the snow is a great sensory activity for him, but he can't go out there naked!

Ugh, just had to get that out.
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#19 of 52 Old 10-28-2009, 04:36 PM
 
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This morning he told me he was scared of his boots. I think because the tag was bothering him, but he was melting down over it. Playing in the snow is a great sensory activity for him, but he can't go out there naked!

Ugh, just had to get that out.
I connect so much to what you've written!
Even though I can say that right now we seem to have a system that works pretty well here at home. I can't really put my finger on it. But ds2 is more able/willing to follow our suggestions, for instance. Not just after a 1 time offer, lol, but after a lot of suggesting/explaining, until he can get to a point where hefinds himself ready to decide to do it. I mean, the idea should totally come from within himself, but suggestions may be the first step to have him start thinking of other ways/possibilities and it needs time for him to process that 'other' information and 'decide for himself'.
As you mention above about your SPD child, ours also just LOVES sensory play like digging in the garden, playing in pools (and more specifically, needing to wipe the street when there's pools after rain, wanting to get rid of the pools, also he sometimes sweeps dust/mud from the street where previously there must have been pools), and playing in snow/wiping it away.
The problem there was(is?) that he doesn't like winter clothes, thick jackets are very unpopular, no zippers up till the chin, no patience for having zippers closed, he hardly ever wears hats/caps or shawls, he would take of gloves after a 'struggle' to be able to put them on in the first place (or mostly just not wear them), he would only wear his 'regular winter shoes' and then get wet/cold all over to the point where I had to drag him in screaming as the only solution to keep him from freezing himself.
But now winter is approaching again, at least it appears true autumn and cooler weather finally started.
We just got him rubber boots, with pirate print, which may help since he likes the pirate theme lastely. Of course, he would resist to the 'new thing', especially when footwear (which he seems to love and hate simultaneously, always issues). I did a hell of an effort to explain him what boots could be used for (outdoor sensory play :-). We also made sure to have a larger size rubber boots for which I can make a comfortably warm filling, we just know heavy (snow)boots won't work for him at all. 2 days after the purchase, without pushing much of course, I could finally convince him to at least TRY them on (really a must for when cold rain/snow season really starts and he cannot but want to play outdoors) and ...surprise surprise he seemed to LOVE them. The only thing is that I had to intervene early enough to take them of, so that he wouldn't decide to wear them all the time from now on.
But certain things just seem to work lately. I'm so glad.

Once he didn't want to get dressed. (well, not once lol but that one time I did this I allowed him to go on the terrace, only clothed in a diaper (which was another issue all together, diapering, but he's out of diapers now, phew) to experience how it just was too cold for that. After 2 minutes he came back in and asked for clothes. Sure, it was a gamble, he could as well have decided to go the way he was (not) dressed, but then I would have wrapped him in blankets, a sleeping bag or my coat for sure :-). And still it was a hassle to dress him (also cfr. enough), but he 'understood' the need of clothes then and there, in that moment.

I truly think the 'change' here has to do a LOT with getting on a good level of understanding of what he needs and HOW he needs it, of how he needs to be addressed/approached, then there is this connection and it gives trust from both sides.
I do not think for us there is a present need for assessment/dx or any form of therapy because of this 'improvement'. Hope we can stay on track.
But my fear is that his spd may still create problems in interactions with others in later stages like (pre-)school. If so, we may search for extra help. But there's no such programs as sn class assistance where we live.
We think it's a good thing for his speech to improve enough too, before we try such a new challenge. Because it's one thing to have SPD, it's another when you can't even properly word those very different needs you have, in a way others might understand... And we're raising multi-lingually.

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#20 of 52 Old 10-28-2009, 04:46 PM
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\
I do not think for us there is no present need for assessment/dx or any form of therapy because of this 'improvement'. Hope we can stay on track.
But my fear is that his spd may still create problems in interactions with others in later stages like (pre-)school.

We think it's a good thing for his speech to improve enough too before we try such a new challenge. Because it's one thing to have SPD, it's another when you can't even properly word those very different needs you have, in a way others might understand...
Thanks for your reply. Right now I feel like DS's problems are interfering with our lives in a big way. I'm afraid to take him to new places, and I'm horrified of trying to put him in preschool. He can play with other kids in a VERY large space, but once you put everyone in a room, even in our own house, he is stuck to me like glue and totally mute.

I think you're right that once the speech improves they get better at all sorts of things. He has such a huge vocab and great verbal skills, but he is reduced to one word when he's frustrated (like when his mitten is starting to fall off, he just runs around screaming ON! ON! ON! and can't say anything else). He is just now starting to get the idea of talking through things after they happen, but he's not totally clear on which emotion to apply, like being "scared" of his boots. I think he really was just bothered by them.

I've definitely learned a lot in the last month since we've started noticing these issues. I've learned that a big sensory activity, like jumping in a huge pile of cushions, suddenly "unfreezes" his brain and he starts talking and having ideas like he just got a year older. It's totally amazing to me.

I called the dev ped today. He was having a bad enough day, and not that much time has passed since the last bad day. We need some help with the particular day to day stuff, even though I have found some great things that help in sort of a general way.
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#21 of 52 Old 10-28-2009, 05:50 PM
 
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Oy, I'd join.

At least he loves being wrapped up really tight in a blanket so he can keep warm,

And the sleep is ridiculous. He can't fall asleep, even when he's exhausted. Doc recommended some melatonin, but he fights through that too!




And what am I supposed to do about his hygiene? I can't cut or brush his hair, cut his fingernails, clean his face, or brush his teeth. I just know he's going to have cavities, of course, this all assumes that he lets the dentist into his mouth without passing out from panic. I don't even dare to try yet.


Ugh, just had to get that out.
Have you thought about getting a weighted blanket?

The only thing that works for 2 of my kiddos is clonidine. And once they started sleeping, the behaviors got better. Plus I could cut their nails when they were asleep LOL

Dh would not let us cut his hair either.So I took him to Cookie Cutters in Draper. They were wonderful, and he got a haircut

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#22 of 52 Old 10-28-2009, 11:17 PM - Thread Starter
 
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wow, its so good to hear from all of you. I think dd would fit right in LOL.

I wish I knew how to keep her in OT, we've backed off for now as I try to figure out how to push it again. She is very attached to her older brother and I think I might be able to get her there if he can come, but this seems like an odd thing to ask for . Also I don't feel that the therapist is that knoweledgable about kids with spd. What was OT like for your kids?

As for hygiene, I do things like cut fingernails while she is sleeping. Luckily she likes to brush her teeth but she did go through a period when she was younger when she would absolutely not take a bath. I sponged bathed her for almost 2 months.

I can't figure out the clothes except the obvious like no tags (no tags on stuffed animals,, dolls, doll clothes etc, she commented at OT that she didn't like the dolls there because they had tags. Right now she will only wear dresses, no leggings, pants or underwear and at the moment only one dress of the 12 or so she has, will she wear and this one she informed me today was starting to bug her on the arms....sigh. She sleeps naked. Winter is hard. She will wear her coat and crocs and sometimes her rubber boots and sometimes socks if I bribe her with something like chocolate for a short amount of time (of course only certain socks will work). I have two other active children who need their outside time and it gets soooo frustrating with her. Somedays I just want to pull out my hair.

In other news, dd is one of the smartest, funniest kids I have ever met. She can be so much fun and endearing. and like on e of the OPs said, somedays she seems completely "normal" and I think I must be crazy to think there is anything "different" about her.

I do think as I think more about it that some of her not wanting to go to OT anymore is because she is so perceptive and she 'caught on " that it wasn't really a place to just "play", there was another agenda at work that she wasn't quite understanding. she can be very untrusting. I don't know if this is an SPD thing or something else but maybe it goes along with the not wanting anyone to look at or notice or talk to her thing. I find SPD hard to talk to with people, sometimes I feel like they think I'm making it up. I know one of OT's mentioned this as well.

anyway thank you all for this discussion
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#23 of 52 Old 10-29-2009, 09:18 PM
 
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Wow, I'm just seeing this thread! My daughter is 7 years old and I feel like she has SPD. She was diagnosed with ADHD, and I'm not sure if she has ADHD and SPD or SPD. What you ladies have been describing is soooooo similar to my daughter. Clothes, crowds, hygiene. What's really frustrating is that my aunts aren't very understanding. She shuts down when she's around them, they're loud, and try to talk to her and hug her.

Anyway, I'm glad this thread was started..
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#24 of 52 Old 10-30-2009, 12:46 PM
 
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Things I sometimes find difficult too are:

Treating a child with SPD differently, I mean, as someone mentioned, where you might prompt one child more to eat some of this or that (eg vegetables :-), I allow ds2 much more easily to remove a food he doesn't 'like' (at least, what he does not like at the time for certain reasons :-) from his plate.
This may seem 'unfair' to other people on the table, but I do not believe much in treating fairly in the sense of 'totally equally-sharing', more in the individuality of every person and situation and interaction.
But it MAY seem unfair in the eyes of my 5yold. What I do know is that ds1 may eat of a certain food when prompting (in a non forcing, non-coercive way, more like reminding and talking about benefits of the particular food as we also do with ds2 but less and he 'gets' it from what we tell ds1 anyway) but what I also know is that doing the same with ds2 may make ds2 extremely upset, so that he may not eat at all and his distress may disrupt dinner time totally and for all of us. And I may offer ds2 the same food on other occasions/days too, seemingly without any problem :-).

Which makes me come to another point:
Siblings of spd children. As the above example, siblings may feel like they're treated differently (which most likely they are since they have different personality and so often different needs), may find they are expected to carry a certain 'responsibility' regarding doing or not doing certain things around their 'sensitive sibling', spd behaviour of the spd sibling may trigger the other child to become hyperactive/difficult too, the 'normal' child may also be triggering a spd brother/sister on purpose and/or (un)intendedly create/worsen conflict/distress, may also be sometimes a matter of attention seeking behaviour?

I truly think some of the ('difficult') behaviour of my older child is/has been a reaction to ds2's behaviours/way of being. Probably not all, but especially the extreme sibling conflict looks like it might stem from such a place. I often felt and feel at peace with ds1 alone, to a certain extent with ds2 alone (as soon as I was more able to get his vibe most of the time), but a LOT of the time absolutely NOT with both of them at home, and definitely NOT when out and about with both.

I have examples but not much time right now. Just wondering how your experiences are regarding these issues.

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#25 of 52 Old 10-31-2009, 09:00 AM
 
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Oh my gosh. Reading this thread is like reading stories about and descriptions of my own kid over and over again.

So the school mailed me a "short sensory evaluation" form for them to feed into their computer to help them determine whether or not they'll give us services and of what kind. I had to keep remind myself as I was filling it out not to get distracted by my own quirks being listed there, so when I was done filling it out for ds, I went back and filled it out for myself. Proof positive that this is genetic. We're only two points apart in total raw score.

It was really interesting to see where our quirks fell, in terms of category. We overlap in half of them and are completely opposite in the other half. I didn't realize auditory sensitivity and auditory processing/filtering were two distinct categories, but reading the "symptoms," it makes sense. DS isn't sensitive at all, but he has a huge difficulty with filtering. This gives me a direction to work with! I am so psyched. OK, the staff was supposed to figure out the raw scores and calculate them, but the key for doing it was right on the bottom of the sheet.
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#26 of 52 Old 10-31-2009, 10:14 AM
 
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I can't figure out the clothes except the obvious like no tags (no tags on stuffed animals,, dolls, doll clothes etc, she commented at OT that she didn't like the dolls there because they had tags. Right now she will only wear dresses, no leggings, pants or underwear and at the moment only one dress of the 12 or so she has, will she wear and this one she informed me today was starting to bug her on the arms....sigh. She sleeps naked. Winter is hard. She will wear her coat and crocs and sometimes her rubber boots and sometimes socks if I bribe her with something like chocolate for a short amount of time (of course only certain socks will work). I have two other active children who need their outside time and it gets soooo frustrating with her. Somedays I just want to pull out my hair.
It sounds like she definitely needs some desensitization therapy of some type. It might work better if you could learn how to do it, then do it with her every day, rather than try to get all of it at a specific "therapy" place once a week. You can also combine your daily therapy with work at a therapy place. One thing I've found is that DS will tolerate some stuff from certain other people (eg. a good therapist) rather than even me.

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I do think as I think more about it that some of her not wanting to go to OT anymore is because she is so perceptive and she 'caught on " that it wasn't really a place to just "play", there was another agenda at work that she wasn't quite understanding. she can be very untrusting. I don't know if this is an SPD thing or something else but maybe it goes along with the not wanting anyone to look at or notice or talk to her thing. I find SPD hard to talk to with people, sometimes I feel like they think I'm making it up. I know one of OT's mentioned this as well.
I think you need a new therapy place, since they don't seem to know much about SPD and one of them is even making these remarks as well. Not all therapists know about SPD and even the ones that do are not always good about dealing with it. You have to shop around for a good therapist, just as you would a good doctor, or anything else. When you find the right one, I think DD will actually want to go. If you are super lucky, you might be able to find a therapist that would come to your home.

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#27 of 52 Old 10-31-2009, 01:16 PM
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Things I sometimes find difficult too are:

Treating a child with SPD differently, I mean, as someone mentioned, where you might prompt one child more to eat some of this or that (eg vegetables :-), I allow ds2 much more easily to remove a food he doesn't 'like' (at lewast, not like at the time for certain reasons :-) from his plate.
This may seem 'unfair' to other people on the table, but I do not believe much in trating fairly in the sense of 'totally equally sharing', mıre in the individuality of every person and situation and interaction.
But it MAY seem unfair in the eyes of my 5yold. But I do know ds1 may eat of a certain food when prompting but that doing the same with ds2 may make him extremely upset so that he may not eat at all and disrupt dinner time totally. I may offer the same food on other occasions/days too without problem :-).

Which makes me come to another point:
Siblings of spd children. As the above example, siblings may feel like they're treated differently (which most likely they are since they have different personality), may find they are expected to carry certain 'responsibility' regarding doing or not doing certain things around their 'sensitive sibling', spd behaviour of the sibling trigger the other child to become hyperactive/difficult too, the 'normal' child triggering their spd brother/sister on purpose and (un)intendedly create/worsen conflict/distress.

I truly think some of the behaviiour of my older child is/has been a reaction to ds2's behaviour/being. Probably not all, but especially the extreme sibling conflict looks like it might stem from such a place. I often felt at peace with ds1 alone, to a certain extent with ds alone, but absolutely NOT with both of them at home, and definitely NOT out and about.

I have examples but not much time right now. Just wondering how your experiences are regarding these issues.
I know what you mean. I make special accomodatins for DS, and although DD is too little to understand this, I'm sure she will eventually.

My sister had many of the same symptoms and behaviors that my DS has, and I HATED all the special accommodations she got as a kid. We are good friends now, but mostly when I look back, I feel like my parents didn't get her the right accommodations. Mostly they just seem to assume that she can't do things on her own, so they are overly helpful. She is in college now and is getting financial assistance from them, which I never got because my parents figured I could just work my way through or figure out the loan thing.

I think you mostly just look at the behavior differently with a sensory kid. DS nearly destroyed the house yesterday. He pulled down blinds, he tore cushions off all the furniture, he took everything out of every cabinet and box. I offered him lots of love and lots of sensory seeking stuff, but for some reason he was just having a really bad day. I would never let that kind of thing slide, and we certainly talked about everything he did, but I see it differently because I know why he's doing it. It's not that he's "bad" and needs correction, he just needs redirection to meet his needs.

So things are going better with DS's sleep, but I'd consider a weighted blanket like MommyKelly suggested. Anyone have a good recommendation?

We got a call back from our dev ped and it is going to take UNTIL FEBRUARY for them to see us for a consult. I am really disappointed. I was hoping to get things moving much sooner. We are going to look into preschool at the special school because the SLP told me we could get an OT consult as soon as we started. I also think it would be good for him to get the social practice. It's 1:30 once a week, so I don't think it would be too much for him. Thoughts?
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#28 of 52 Old 11-04-2009, 09:50 AM
 
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Could we rename this thread and make it an SPD support thread to keep it going, PLEASE? I think it would really be helpful to all of us dealing with this at home!

Another issue regarding my spd son of almost 4.
I often feel verbally and emotionally (also referring to my patience almost running out at some point, mostly daily scenario) drained by having to use so much verbal (and other!) energy to try and prevent, suggest, avoid, explain, redirect, repeat, model, and DO it myself etc. the same/similar/new things OVER and OVER and OVER again. I really do not like to do this most of the time, but the ONLY reason WHY I do it is because it's what's needed around ds2 to make him more or less properly functioning, and here and there struggling to bring in OUR needs, in confrontation with his own 'difficult' needs. It's what works to keep things going around here without too much disruption by ds2. But is is so totally exhausting and nerve-racking. I realise I may even do too much of the same mistakenly towards ds1 who does not have spd issues, just out of habit regarding communication with ds2 (well, some sensory things here and there as I guess all of us have to some extent, but not so that it affects his personality/functioning or other people's lives/peace).

Still, better this than NOT doing this effort and having horrible days because everything gets out of synch like that.

At least DH knows what I mean when I say I'm often so TIRED of reminding ds every single time, eg not to undress (partly or fully) after each visit to the bathroom (VERY frequent visits most days, eg he needs to go bathroom for every upcomming wind and then shouting he pooped while he didn't). But this is and will be the only way he will finally get it and not undress, but only when he's again ready to do so (again because he had a period where he didnt do this that often). It's already an improvement that he lets me redress him, and definitely that he now comes (or shouts/screams) and tell me to help him dress again (but his impatience accompanying this demand is driving me nuts in its own way). But regarding this example, I'm just so tired of the reminding, and modeling and not seeing the anticipated result (yet) and tired of wearing and re-wearing my kid's pants and underpants/socks/shoes 10x daily (or more, I will get crazy by counting it though).

Anyone who knows what I mean?

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#29 of 52 Old 11-04-2009, 10:10 AM
 
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i have not read all the responses but i just wanted to jump in here with the fact that school would be a complete and utter train wreak for my DS.

we homeschool and it works really well for us.

DS works best in short little bursts... 15 minutes at a time and we stick to that. we unschool, live consensually and generally try to pay attention to our needs and how we can best fill them with our own pace and schedule.

many people say that SPD kids need "lots of structure and boundaries." i tend to think this is true for the caregivers in terms of getting kids to comply. i don't think SPD is a one size fits all situation.

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#30 of 52 Old 11-04-2009, 10:35 AM
 
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Originally Posted by umami_mommy View Post
i have not read all the responses but i just wanted to jump in here with the fact that school would be a complete and utter train wreak for my DS.

we homeschool and it works really well for us.

DS works best in short little bursts... 15 minutes at a time and we stick to that. we unschool, live consensually and generally try to pay attention to our needs and how we can best fill them with our own pace and schedule.

many people say that SPD kids need "lots of structure and boundaries." i tend to think this is true for the caregivers in terms of getting kids to comply. i don't think SPD is a one size fits all situation.
I so totally agree with you. However, living consensually (or trying much to do so) with a young spd child as you know can be VERY challenging :-). The structure we provide is inherent to an extreme (TRULY EXTREME) flexibility and is only the structure ds2 asks/needs at thast moment/period in his life. Apart from that we have our 'daily functioning structure' with only few 'inflexibilities' as in: dh gets up first, then ds2 nurses, ds1 gets up, I take my shower, we all get ready to go out, bring ds1 to preschool, pick up ds1 from preschool at noon, evening: dad comes home, go to bed). We won't force structure on him, or create one especially for him so to say, nor will we insist on a rigidly structured lifestyle for him and all of us because that is often thought what spd kids 'need'. Therefore, lots of verbal cues and explaining to help him in understanding and processing and learning, not focused on having our spd child 'comply' and in our turn us dealing the way we deal with him because of an understanding of his special needs. The structure he creates (like wanting the same food over and over again over periods of time, and this food being replaced by another 'addictive' one over time) is the one he needs and the one we comply too as much as we personally can, in a way it can work in combination with our own wants and needs. This is NOT always that easy, sometimes it needs a little sacrifice but otoh sometimes you get MORE out of it, too. In the end, we enjoy finding different perspectives and we do learn ourselves to be flexible, creative people.
My ds learns boundaries by experiencing where he tends to overstep OUR boundaries way too much, and he needs to know (and be repeatedly reminded, sometimes what seems like endlessly) those limits for sure to make our home a liveable place.
But he can pretty much be HIMSELF in our care if you know what I mean?
Some may experience this as permissiveness, especially the combination mostly consensual/spd, lol. We see that this is what we need and what works best for all family members so that's where we come from, or go to.

Yep, know about the 15 min max. short little bursts (except movies and tv or some obsessive play/books consuming!) :-)

I now postponed (pre-)school for him, but totally homeschooling is not an option anymore by age 6, school is obligatory in this country and in our case required anyway (I speak a minority language with my kids at home). I dread him in combination with school structure and rigidity with not much space for children's particular personal needs. However, ds2 is very familiar with the walk to and from school, the yard, the inside of the building and some of the staff through ds1, so that may be a plus for the pre-school future too.

Me:,loving HB,two active sons of 3 & 5,1 cat, nature lover,,extbf,occ,SAHM, multicultural/lingual family,+/-cl, :become a better parent/person by not expecting to be the perfect parent/person
ernalala is offline  
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