Sensory Integration Dysfunction / Sensory Processing Disorder – Part 4

When Adam was about a year old, even before he got the SID diagnosis, several people recommended I read “Raising Your Spirited Child” by Mary Sheedy Kurcinka. I guess because they could pick up even then that he was an intense baby.  At the time I was too overwhelmed by having twin babies that although I read it, I couldn’t take much of it in. I recently reread it (after reading her great sleep book “Sleepless in America” recommended to me by Orange) and I fell in love with the book properly this time. It is a great book, not just for kids with sensory integration dysfunction, but any child who is a little ‘more’ – more intense, more spirited, more sensitive, more shy…. An excellent book, highly recommended.

One of the things the author does is challenge us to view our ‘more’ children in a positive light. To use positive frames of reference when referring to our spirited children. As I said in a previous entry, I’ve never seen Adam’s specific sensory issues as a negative, or as a disability. I guess because his SID is not debilitating and because I have sensory issues too, and I think I am pretty ok, I’ve actually always viewed him as pretty special. Almost gifted, in a way. However the one thing I have done, is to see more of the challenges he will face than the opportunities. Again, based on my own experiences I suppose.

Society values ‘normal’. At least it did in my day. A child with sensory intensity is different to ‘normal’ as so I worry about how he will cope when I am not with him. I worry that people will see his determination as stubbornness, his passion as inflexibility and his intensity as being a bad thing. And so I worry about him. I worry about how he will cope when he goes to play school next year. I worry about how he will cope when I am not there. I worry too much, I know.

But besides the worry, I am constantly reminded how absolutely brilliant he is when it comes to noticing the world around him. For example, he is always asking me ‘what’s that sound’. He notices all the background noise that ‘normal’ people don’t take note of. “What’s that sound Mom?” That’s the noise of the tyres going over the speed bump in the road, my boy. He hears things that we don’t ever notice. And he is so keen to learn more about it. We have long conversations about the noises he hears and where they come from.

He also notices things far beyond what most people do. It is amazing. When we drive in the car, he gives a running commentary on what he sees. Bulldozers, red cars, cranes, trucks, diggers, runners, cyclists….he talks non-stop. Whenever I can, I will stop and roll down the window so that he can see the bulldozer etc up close.

A few weeks back we drove past a bulldozer busy clearing a piece of ground, behind one of the shops. Then around three weeks later I happened to drive down another road for the first time, one that runs parallel to that piece of ground where we saw the bulldozer and he immediately knew where we were. He peered through the window from his car seat, “Where’s the bulldozer gone Mom?” Amazing. I can’t believe that he can orientate himself like that. 

Then on Sunday we were driving down one of the main roads towards the mall. A dual carriage road that I only drive on about once every two weeks or so. Two weeks ago we drove past the scene of a car crash (great excitement! Tow trucks!) and when we drove past the exact same piece of the road Adam asked me where the crash had gone. I can’t believe how he remembers that stuff and how he is absolutely brilliant with directions and orientation.

It is like he sees more than what we do. As if he has a helicopter view on the world. The world is fascinating to Adam. And I know all mothers think this, but I think he might actually be bloody clever. (He gets that from me)

There are lots of other good things about my boy. He is sweet, very very loving, fiercely loyal and protective (especially about his sister, even though she bosses him around ALL DAY LONG), clever, funny, happy, kind, friendly, sunny, outgoing, strong, beautiful. He is such a friendly, happy little boy. And so confident. He will go up to any person and chat to them, no matter who they are. I love that about him. I love everything about him.

And then there are the so not so divine parts......

He can be such hard work sometimes. He gets so intense about things. He spikes so quickly. Gets so upset. Needy. Cross. But again, it is way, way better than it used to be. The first six months of motherhood was hell for me, pure hell. He was an incredibly difficult baby. Thank god for Kate, she balanced him out.

I love both my children equally, but I love them differently. What I love about Kate is that she is so independent, sassy, confident, clever, outgoing, strong, bossy. Kate will rule the world one day; no one will ever stand on her head. I love her with a deep sense of pride.

Adam I love with an intensity that scares me. We are so deeply connected. Before he was born, I worried that I might not love him enough. Because I had lost my first born, a son, I worried that I might never love another son as much. And then he was so ill after being born. I never got to hold him until he was 10 days old. By the time he came home, Kate had been with me for 12 days already. We had bonded. I worried I might not love Adam as much. I needn’t have worried. I love that child so much that it takes my breath away.

I see so much of myself in Adam. It has made me extremely empathetic to what he is going through. I know what it is like to be him. We are connected in a very deep way. More than I can describe. We feed off each other. Which is not always a good thing.

Many of you have said he is lucky to have a mother who understands what it is like to be him, lucky to have a mother who cares so much for him. But I care too much; I understand too well.

Because I know what is like to be him, I am over protective about him. I know I am. It’s hard for me not to be, but I have to. I’ve been told by his OT and by the psychologist that I have to let him fall a little. I have to allow him to learn about picking himself up on his own. It’s hard. Very hard for me. All I want to do is hold him close and not let him ever get scared or hurt. Of course I can’t do that. I know. I am working on it.

My biggest worry at the moment is sending them to play school next year. Kate is SO ready. She is going to love it. I can just picture her bossing the other kids around. And as for Adam? How will he be? What will the other kids do? Will he be scared? Will he call for me? Worry worry worry.

(Perhaps what I will do is let the teacher read these posts. Yes, that’s a good idea. It’s a small play school. Only 20 kids and three adults. He’ll be fine. I hope.)

As for the rest…..Well, as you know, Adam does not sleep through the night, never has. After trying all sorts of things, Orange suggested I read “Sleepless in America” by the same author as the book mentioned above. It changed my whole outlook on sleep. And then I had a conversation with my brilliant psychiatrist, who I am in love with. (Apparently there is a name for this, its called transference.) She explained it to me like this: Some kids, like Adam, take a Polaroid of their mothers when they go to sleep. Then, like when you leave a Polaroid out in the sun, the image fades after a while and they need to take a fresh image. Between the book and the psychiatrist, I am now sleeping next to Adam every night. And I know some of you might say this is a bad idea, but I know in my heart that my child needs me, and it is not forever. He won’t need me forever, but while he does, I need to be there for him. Now he wakes up once or twice a night, looks up at me, and then goes back to sleep. He just needs to refresh his Polaroid. I can’t deny him that.

Of course now that I know what I know, I feel like the worst parent ever for doing CIO with him. But again, I can’t look back. It doesn’t help.

As I said before, his main issues are around vestibular and proprioception. The vestibular thing means that he hates putting his head back. If he is on a swing for example, he can’t lean his head back. It is too much for him. Another example: when he lies down for me to change his nappy he tells me all the time “the roof can’t fall down, mom?”. I have to tell him again that the roof (or sky) can’t fall down because he says it feels like the roof is going to fall down when he put his head back. I suppose it must feel like when you are drunk and the room spins. The OT helps with this.

But by far the worse thing that Adam does is that he uses too much force with things.

Let me see if I can explain what this is like. He can’t pat softly. He will start out softly and before long he is patting too hard, way too hard. He doesn’t do it out of anger, he does it out of too much intensity. When we play and wrestle or hug, then he will start of hugging me tight and before long, he is either head butting me, or patting me really hard on the head, or poking me hard. When him and Kate play and roll around, they laugh and play and tickle, and before long he ends up patting her harder and harder until he hurts her. It is as if he can’t help himself. The joy or excitement or love is just too much. You know that feeling when you love something so much you want to squeeze it, HARD. That is the feeling he gets. He can’t switch it off.

It doesn’t sound like a big deal, but it is. He hurts me. And his father, and sister. This weekend alone he has scratched my face twice and head butted me on the lip. And he is immediately contrite afterwards.

I hate it, not because it hurts (even though it does!!) but because it is such an antisocial thing to do. I worry for his part. He hurts his cousins, he gets too excited and then he pokes them or hits them. They are girls and they usually end up crying. Whenever he is busy hugging or playing with other kids or adults, I am always there, hovering, because I know, without fail, that it will end up with him hurting them. I can usually see it coming, he reaches a certain point in his laughter or excitement and I usually swoop him and take him out of the situation or I remind him not to hurt, or to calm down. “Softly Adam! SOFTLY!” And then most of the time he manages to calm himself, stop himself from banging or hitting too hard. But I can’t be there all the time.

My mother recently told me to stop hovering when Adam plays with her, she can handle herself. So I said, fine, but be warned, he is going to hurt you. She said she is big enough to handle it. And what does he do on Sunday while they are playing? Head butts her. It’s embarrassing. I worry that other children will reject him. I worry that people wont like him because of it. I hate hate hate that he does it. What will happen at school?

This too hard patting thing has worried me since he was a baby. He has always done it. He takes his father’s face in his hands and they tickle and play and hug and then bam, he hits his head against Marko’s face. Or he pats the dog, softly, softly and then bam, he pats too hard. Which means I can never leave him alone with any animal. It is not an angry thing. He never does it when he is angry, only when he gets too excited.

We drove past a dog today and he said to me “look mom, look at that beautiful dog. Softly, softly”. He knows he is supposed to pat softly but it is as if he can’t help himself.

This is where I need your advice. Does anyone else’s child do this? How do you handle it? I know that he will get better once he matures and realizes that he has to control these urges, but what about school? What happens if he does that to the other kids? Damn, this school thing is stressing me out terribly.

Edited to add: This is not normal ‘rough and tumble’ boy play. In fact, Adam is not a rough and tumble boy. That kind of rough play freaks him out a little. This is different.  This is an inability to control the intensity of his feelings. Not the negative feelings, the intensely strong positive ones. He pulls my face towards his and starts kissing me and nuzzling me and after a while he just can’t help himself, he has to bang his head against mine. I can’t explain it other than that. Except to say it is not normal rough and tumble. That’s different.

Oh and re the ‘normal boy behaviour’ of noticing things and hearing things – remember I am looking at the positive of my special boy. Allow me a little of that, k.

Ok, this has got really long and I need to end it off now.

In conclusion, Adam is my extra special, extra sensory boy. I love him more than I ever thought it was possible to love. I understand him so well; I see so much of myself in him. This SID stuff is just part of who he is. I know, without doubt, that it will improve hugely as he gets older. But in the meantime, I will do whatever I can to help him be happy and to thrive. Because at the end of the day, that is all I want for both of my children: happiness. Everything else is secondary.

Thank you for reading our story, I hope it has been interesting. It has been really good for me to write it all down. 

 

Comments

[charne]

wow, thanks for sharing this with us, its been such interesting posts to read.

[Adi]

I'm not a mom so this is, on first face value, assvice. But I am also highly sensitive and that thing about doing something too much because you have become overstimulated is most known to me. If I can get my lazy butt out from in front of the computer, I find that doing a tough session at the gym (or any exercise, actually) is great - it gets it out of you. Because as adults, we of course don't headbutt anymore, we just internalise the feelings and somewhere, it is vented in a negative way (anger, depression). What about something like karate or a contact sport? You can start them really early on some of these, and it is more an outlet and play and fun than serious.

[Jazz]

An absolutely fascinating and informative read! Thanks!Another book looming?

[Kim]

It all sounds very interesting but I am wondering if there is a little overanalysing his behaviour. By that I mean thinking that some of his behaviours are due to the sids but really they could be just normal behaviours (although not acceptable) for boys or for small children. I am only talking about things like the good ability for hearing as I know my boy has fantastic hearing and hears stuff I can hardly hear or filter out. He also has a pretty good memory which amazes me - for places and things he has seen before - for example if we are out on the motorway going somewhere we have only been once before, a long time ago and he says what shop we are going to - remembers something in the shop. He is remembering certain things along the way. The ohter thing is the headbutt thing - my son does that occasionally and the head patting thing. I've noticed it with some of the other little boys too. Those are the only things I am referring to. I guess you have to be careful not to put every behaviour down to his SIDS that's all.

[Heather G]

I thought the rough patting was a boy thing and in particular a two year old thing. My son is a bit rough but some of his friends were a lot like Adam. We kept consistantly reminding them to play gently and now they are 3 and a half it works pretty well. Much less whacking, biting etc. and the start of play wrestling where they know when to back off on the force. Some girls can cope with this kind of play and some can't so I have to admit the play is beginning to segregate.

Boys are amazing at directions,locations etc. I swear their penis points north when asked. That must be how they do it.

[Ann Johannesburg, South Africa]

Thank you so much for sharing this with us.
Adam is so very, very lucky to have you
xxx

[Meg]

Hi Tertia,

For what it's worth I've known many a small kid who is too rough and *accidentally* hurts other kids! Including both of my own. My daughter (2) sits on my son's (7) butt when he's lying on his stomach, and launches herself up in the air and comes down butt-first on his butt. It makes the air whoof out of him and it must hurt!!!! But she thinks she's being affectionate and it's hilarious.

The teachers will be on the lookout for stuff like this, and if you tell them in advance they'll be extra careful with him. Accidents will still happen, and maybe more will be caused by him than other children, but I guarantee that other children will be causing hurt accidentally too.

My son got bitten, hit, upset by other children at his daycare. Not every day!! Once every 6 months or so he'd get hurt or upset badly enough for the teachers to have to tell me about it. And I saw accident reports for other kids quite often. It hasn't happened to my daughter yet but no doubt it will.

I also know that it's really hard to trust that everything will be OK in a new situation (playschool etc.) until you see the kid actually *in* the new situation.

Good luck!

[Norman]

I've loved your SID/SPD posts. I hate being touched on the top of the head, it's just a no-go-zone as far as I'm concerned.

An interesting thought, is to watch Adam's (and I guess Kate's) behaviours depending on what food they're been eating recently (like the past few meals). I've seen it with friends kids, that sugar will hype them up. I'm not saying change their diets, I'm just saying notice, and be aware, and see if there's a pattern.

Light and Love

[Sarah]

You are so generous with your honesty about how it is to raise your children and I often think of you when I am busy parenting my own child. I don't have any advice re the "softly, softly" but will be reading everyone else's input because I always learn something when I stop by your blog. Thank you.

[Emma]

I'll leave the comments about Adam's story to people who do have children, but I just wanted to say thanks for explaining and giving me a look in your head, once again.

And: the new pictures of Adam and Kate are amazing. There's Adam's inquiring look and then there's Kate, looking so smart and sweet at the same time. Great captures!

[Veronica]

Thankyou for sharing this with us. It was enlightening.

I think part of parenthood is learning not to hover. It must be greatly increased for you because of the SID, but you are his mother, you know him better than anyone (except maybe Kate).

[Jean]

I've really enjoyed your posts about Adam this week, I think you're doing a great job. One thought I had on the sleeping thing (mum of twins here...been there!) have you thought of a photograph or more a group of photographs in maybe a clipit frame. Adam could choose the photos of you and him (maybe with Dad and Kate too) and you could hang the frame in his room with a little night light near to it so that he can see it when he wakes. It might take a while and maybe it might be easier when he starts being more tired at night when he starts school...just a thought

[Shandra]

What a nice series of posts.

I always said that there was no way I would co-sleep. Then I lost my daughter and I bought a co-sleeper for next to the bed (a bassinet would have been fine) for my son. Then I said he would have to move to his own room at 6 months. Then a year. Around a year he started sleeping in our bed and I felt like a failure. Now he's just over two and in daycare all day and I am so glad we sleep together. I think he has that "polaroid" thing too, and I am glad. I see him getting more independent every day and I am pretty sure that in 3 or 4 years, it simply won't be an issue. So just a sort of "I get it" about the sleep.

[Bianca W]

HI Tertia,

I wanted to echo what some of the mom's have said about boy/age behaviour vs SID behavior. My Bryce is going to be 3 in November, and this year has been really trying for me. He is a stocky little sausage, a bit bigger than most of hi.s peers, and went through a real bully stage. I too used to "hover" around him to make sure that he didnt hurt any other children and it was awful. He has calmed right down just recently and is starting to understand the your turn my turn concept, as well as the sharing is caring. It does get better - I promise. (Bryce does not have SID BTW).

I also get you on the sleep thing. I swore blind when I was pregnant that no children would be in my bed............here we are, almost 3 years down the line, me, Hubby and Bryce in our bed and little Hannah in her moses basket next to me, so by 5am, its generally all four of us in the bed. Cosy, very cosy. In my defence, when Bryce is not feeling well, about to puke, got a fever etc etc, I know immediately. Thats my excuse, and I am sticking to it. ;-)

[Kerryn]

Hi Tertia,
My daughter sleeps with me and wakes up in the night too. She doesn't need to look at me, but she does need some form of touch (she will put her leg over mine, or touch my shoulder, or cuddle closer to me.) She is almost seven and still needs this. I will continue to let her sleep with me for as long as she needs it. Don't let anyone judge you for sleeping next to Adam. I slept with my mom until I was about nine (but for different reasons) and I don't have any issues because of it. Sleep next to Adam for as long as it takes.

As for the school. If you have a word with the teacher, and teach her some of the methods to calm Adam down, he will be fine. As you said, he will eventually learn his own coping mechanism, and until then he will need an adult to help with it - at some point this will have to be someone other than you.

I must commend you for being a fantastic, devoted parent who obviously loves her children beyond all reason (as we all should.)

You seem to be doing an absolutely fantastic job so far. Things will get better as you continue to learn and help him to cope with his special gifts.

Adam will probably be teased, he might even be ostrasized by so called "normal" children. But this happens to all kids and with your love and dedication he will come out the other side a better human being for it.

I know this is a pretty long reply, and it all boils down to one simple thing - do what feels right in your heart, whether others agree with you or not. You know what is best for him.

Personally, I would rather be regarded as overprotective and hovering, than have any regrets that I did not do enough.

[Sheri Bheri]

Tertia - thank you so much for this series of posts! They really opened my eyes about my little girl. I really liked the idea of the spectrum, because I would say that my Zoe is even closer to the middle than Adam, but she still has issues (that I didn't even recognize until now - the not laying back thing - WOW!)

Zoe goes to preschool (okay, it's a daycare, but it's in a school, and we call it school) so I have some small advice for you. The transition thing, and the routine have to be continued. So we warn Zoe the night before that "tomorrow is a school day", and then our morning routine is different than for weekends. But everything follows each other until we're out the door.

We also did a transition where I would go with her for a few hours at a time, for few days, then she stayed by herself after I left, THEN she started full days.

She did have a hard time once we got to school, it was very hard for her to see me leave. She cried every morning for 2 months. But now, I figured out that I didn't give her quite enough transition time. So now, I sit on one of those dinky little chairs, and hold her, and chit chat with the teacher and the kids. I comment on what the kids are playing with, and how Zoe can play with it later. Then I ask her if she's ready for me to go. Sometimes I have to 'urge' her a little bit, but the time that I have to stay is shorter and shorter. Then she runs to the window and blows me kisses as I leave. I think that it helps her to think of school as a place that I'd like to be at too, not just a place where I drop her off and take off.

She has also improved since we started playing school at home with her stuffies and dolls. The Mamas drop off the babies, the babies cry a little bit, then they play, then they sing (try and learn the songs that they sing at school), then they eat, sleep, and then the Mamas come and get them and "Hurray, I missed you so much! I'm so happy to see you!"

As for the head butting ect, they probably just won't let it get to that. At our school, the kids are gently discouraged from touching each other too much. I know that sounds bad, but it's not like that, they'll say "Zoe, keep your hands on YOUR body." (which sounds better in French). So that it's not-so-much about NOT touching other kids, as just keeping your hands to yourself. I'm sure your preschool has had issues with hitters, biters ect, so they must have some sort of 'keep your hands to yourself' policy. You have to remember also that these people are trained professionals. They've seen it ALL, and even then if you tell them what to look for (as in Adam getting too rough when he's HAPPY, not when he's MAD), they'll know what to do.

Oh yeah, and if he needs it, give him a picture of you (HAPPY! Blowing kisses, or some other secret I-Love-You sign) to keep in his pocket or cubby. I think it would be really cool, if you were crafty at all, you could have a teddy, with a vest (near his heart) that opens to a picture of you (& Marko & Kate & Mimi & Rose - whomever). At our preschool, they're allowed a teddy for nap time, and they're allowed to keep it in the mornings, if they need it. It's actually cool to see the teachers pluck up the teddies and put them away once they've been put aside and aren't needed anymore.

Sorry this is so long. Godd luck. Everything works out in the end, if it's not working out, it's not the end yet.

[Woody's Girl]

Regarding the over-enthusiasm, my girls have been that way, too. For Lindsay (now 6.5 yrs old), she tends to clench/grind her teeth when she's extremely excited (usually while hugging something tightly and/or petting something). She also usually is emitting a sharp squealing sound. When she was 2-ish, she expressed the same uber-enthusiasm a few times by bearhug-turned-bite (on my shoulder).

What I have done (now) when I catch her getting over the top is to ask her to notice that she is clenching her teeth, and to make a conscious effort to NOT do that (for the sake of her pearly whites, if nothing else!). It also refocuses her attention/energy on reigning in her enthusiasm a bit.

HOWEVER... in retrospect... I think a helpful approach might have been to have a special, squeezeable "lovey" for her to carry at all times. Then, when she'd get that overwhelming surge of emotion, she could release some of the energy with the toy, rather than directing it at another human being.

I have a question for you regarding the vestibular thing. It almost sounds like vertigo to me. Has a doctor ever considered the possibility of Adam having an issue with the tiny bones inside his ear? Does Adam have the same, or similar, reaction to being flat on his stomach as being flat on his back?

Very interesting, insightful posts, T. I appreciate you sharing these details with us! It's not only educating us about SID, but also giving us such a personal connection to your family.

It's clear from your writing that you are a mother who is totally in love with her children (and they, with you!). How beautiful. :-)

[cooler*doula]

Hey Tersh,

Very interesting. Thank you for this.

I'm not sure how old the cousins are, but would it make sense to tell them that sometimes Adam gets a bit excited and doesn't mean to hurt them, and that it might help him if they gently remind him softly softly when they're playing?

In other words, give the kids the tools they need to work it out together. Might work?

[Amy]

When you were explaining the way he hurts others, it kind of reminded me of a cat... Have you ever been petting a cat, and it's purring and loving on you, and then it just turns around and nips you for no reason? Maybe little Adam is part cat!

[Nicola Theron]

I could of written this for myself and my son. Let me tell you they do get better, Ben is now 4 and 3-4 was kind of rough (he tip toe'd a lot too) but when he hit 4 he got a LOT better. Honestly pre-school has been the best thing for him.

[nicknmegsmom]

OMGosh - our boys are 2 of a kind.

My Nick (diagnosed PDD-NOS) has such a keen sense of direction for 3 yrs. It's quite remarkable.

I hear, "What's that noise?" all. the. time.

I get a non-stop narration of all the sights in the car. Especially trucks, trains, garbage trucks, etc.

The intensity. Oh the intensity. When he's having a good time, his intensity just spirals and spirals until it's out of control. And someone usually ends up crying. I have to institute time-outs often to calm him down before it gets out of control. It's much worse when he's tired or over-stimmed

They are a challenge. But they keep us on our toes!

[Jendeis]

Hi Tertia,

Thanks for these series of posts. My husband and his sister (and probably his mother) have SPD, but they have never been able to explain it as clearly as you've done so here. I'll be sharing these posts with them to see what they think.

Both of your children are lucky to have such an understanding and caring mom.

[Orange]

Beautiful post, my dear.

Ben has trouble filtering out outside sounds when he's doing his homework. Some noise from down the street intrudes and distracts him—some noise I can't even hear when I try to listen for it! It would probably make sense for me to turn on a fan or have the laundry machine going while he's doing homework, eh? Something to cover up the other noises.

Ben has always been very observant through the car window, too. Drove me nuts! "What does that sign say?" he'd ask (before he could read it himself). Sweetie, I'm traveling 35 miles per hour and I can see eight signs right now—I don't know which one you're talking about. The trucks, the cars, the endless commentary on trucks and cars!

Ben doesn't use too much strength in his affection, but when he was an infant, he was prone to hurl his torso backwards or forwards when being held. Baby cranium whacking into your nose? Ow! Baby cranium whacking into your ear with a hearing aid in it? Bleeding ear. And I'm like you, Tertia--I don't do well with surprise pain. So that was fun, yeah.

[amy]

"Of course now that I know what I know, I feel like the worst parent ever for doing CIO with him. But again, I can’t look back. It doesn’t help."

This stuck out instantly.

You are describing my son (who has been diagnosed with a two-year global developmental delay). He never slept through the night until maybe a few months ago (he's almost 5 yrs old). He NEEDED me at night for a long time. He finally sleeps on his own, in his own bed. He still has night terrors and still cries, but I don't have to sleep beside him anymore.

Your concern over having done the CIO method... I did it to. To find out that it didn't work. There's no harm in TRYING something (parenthood is trial and error... all the time), but the harm would have been if you had continued to do it knowing it wasn't working.

So, take that, and then let it roll....water off a duck's back and all that. Big breathe, release... no regrets.

The playing thing?! OMFG my son does that! He hurts when he plays. He CLIMBS people. I never saw it as an "intensity" before. Wow, thank you for opening my eyes. I get SO frustrated with him because he doesn't seem to be able to control his force, he open-handedly smacks someone, or dive-bombs head-first into their face. Wow... makes so much sense now. Thank you.

[susan]

T- this is amazing. My nephew has the same thing and I never knew what he was going through. His mom tells him to hit his patience button whenever she senses him getting to excited. It's his belly button. So he presses it once and if that doesn't reset him, she rubs his tummy or his back for a few seconds and he seems to calm right down. Good luck with this all. Very interesting stuff.

[sar]

It is so wonderful to she a mother so in love with her child. Her whole child. How lucky your babes are to have you!

[Brainy girl]

I wanted to second someone else's suggestion about the karate or other type of physical outlet. I don't have any personal experience with this, but a good friend of mine also had a VERY intense son who had been a major handful from the day he was born, and she tried him in karate lessons - starting at maybe 4?. She swears it was the best thing they ever did for him (and in fact, now the entire family does karate!) - it gave him the tools to learn some self-control and self-discipline, focus, etc. plus it was great for his physical coordination and self-confidence. Worth thinking about, maybe for the future.

[Orange]

Tertia, does the OT clinic have "clouds"? At ours, a cloud is a cloth sack (typically a comforter cover) filled with foam blocks. A kid can jump off a swing or a climbing wall onto the cloud, or just hurl himself into it without injury. I actually ordered a bunch of foam blocks from a gym equipment seller and loaded a comforter cover with them. It's giant, and there's no good place to keep it in the house, but sometimes it's great to have around. Ben can jump into it, and I can flop onto him when he's in it. He likes a lot of pressure, and also the proprioceptive input of hurtling himself into something. A pile of big pillows could serve the same purpose as a cloud.

And Adam might well like to be touched as hard as he touches others. My son likes FIRM hugs, being whacked in the back with a pillow, etc.

[Charmaine]

No kid could ask for a better Mom. You are fabulous, I loved your story, your kids are adorable and you are a #1 Mom!

[Rebekah]

Tertia, I won't pretend I have much to share with you in the way of motherly wisdom. I'm too busy getting knocked on my own can to think that. But as I read about how you worry about Adam ... about his future, schooling, etcetera I was reminded of something a friend of mine shared with me that has helped me a lot. I was pg with our older son and was telling her about all the worries and concerns I had about first-time-motherhood ... there were a lot! You know what she kindly told me? "God doesn't give us grace for our imaginations."

Meaning, God WILL help us through the difficulties that come to us, or our children. But He doesn't help us through all of the things we imagine, worry or think MIGHT happen in our futures. We must take one day at a time. There is a Bible verse that says, "His mercies are new every morning." I love that. With God's help that is all I am supposed to handle ... the day at hand! If I try to take on my future I will surely be overwhelmed.

I know it is hard not to look to the future for Adam, but I hope that what my friend shared with me is maybe a little helpful to you.

[Rebekah]

If I may add another comment ... I was wondering if the whole patting too hard thing is because that kind of "strong touch" feels GOOD to him? Similar to the way the weighted blanket, brushing and pressure feels good to him, I thought that when he is coming in contact with others, when he starts touching more strongly (ummmm, hitting even?) it is because the physical feedback actually feels good to him? If that is the case, it is no wonder that he would have a hard time stopping himself once he starts. That would take a while to grow out of, but I really think he will!

[Jen H.]

The polaroid, it made me cry. Lovely.

[Heather]

I love the way you described loving your children. I felt about Skeeter the way you felt about Adam - not because we had lost a child, but because we wanted a little girl so badly and got a boy, and because I thought I couldn't love two little boys the same. It's amazing how much we're capable of feeling, especially when it comes to lovem about our children. There is always room for more love. :-)

And about CIO - you can only work with what you know. You didn't know what the complete nature of the problem, so you did the best with what you had. No harm, no foul. Don't look back, for sure!

Fabulous! Loved the series of posts! I think his teacher(s) will be very well prepared if you allow them to read them, too. :-)

[Meli]

Tertia,

the way you write about your feelings regarding your children is truly touching. Brought tears to my eyes... just lovely.

It sounds like you are doing all you can do to help both kids lead happy, healthy lives. I think you're wonderful.

[Michelle]

I just have a question for you. It's not really related to this post. You mentioned that sudden touch really startles/alarms/upsets you. What was pregnancy like for you - particularly toward the end as the kicks got harder?

[Suzie-Q.]

{{{{{{{{BIG HUGS}}}}}}}}}} for sharing what and how you did about your special miracle boy, Adam.
I know Evan is hyper-sensitive to some things and see some of him in Adam. I tend to imagine he will outgrow or adjust to most of his issues.
Know this:
Adam is one lucky boy to have you for his mom.
Remember... no regrets... just do your best and keep moving forward.
xoxo
Suz

[Amber]

Adam sounds like the perfect boy for you Tertia.

Absolutely wonderful.

[Auburn]

Great post. he seems like such a sweet, wonderful boy. I can really see why you feel so protective and connected to him.

I have a feeling as he gets a bit older and can recognize the intensity and what it is he's gonna be just fine. He is at an age where there is really no such thing as impulse control but he will outgrow that and learn how to control the impulses created by the sensory thing. He won't outgrow all of the feelings but I bet the behaviors associated with it will improve a lot when he can articulate more and pracitice self restraint. He's gonna be just fine.

On the sleeping thing...any way you can do a reverse of the video baby monitor and have one in your room so he can see you sleeping in there? Maybe he's not ready for it quite yet but you could try it when he first goes to sleep and then go in there if he really needs you later in the night. Of course...better remember to turn it off when you have your own grown up play dates. That is not a poloroid you want him to drift off to if you know what I mean.

[angel]

its fascinating tertia- thank you so much for sharing it with us! i do hope you'll continue to share as ypou learn more...

[Eva]

Wow. Your posts have helped me understand my partner so much, who has never been diagnosed but has MANY self-coping habits to deal with the exact symptoms you are describing. I have made lots of room for these behaviours-- he can't sleep without a heavy down quilt, lack of touching and then intense holding, freakouts over noise and sudden events, exhaustion from overload. I think for him as an adult, exhaustion from coping is the biggest problem. Whereas I understood that any inconveniences or barriers to intimacy aren't his fault, you have really helped me get an "inside" compassionate view. Thank you for your candor.

[Suzie]

Just wanted to add my $.02 in here. have a kiddo with SID who is a sensory SEEKER. This means that he is constantly seeking input - be it from punching/biting/hitting his brothers or wearing tight clothes (or hats and goves in the middle of the summer). He is now 4.5 years old and can understand the difference between good touching and bad touching. (Not good touching like we knew, but how NOT to hit/pinch/bite). It took us about a year and for him to hit the age where he understood the differnce. Good touching is hugs and squeezes, and if someone gets upset he knows to go to an adult. He constantly asks for hugs, which is much more socially acceptable. For you the hitting can be channeled into things that are acceptable to hit - allow him to hit things but guide him to hit things like pillows, beds, puffy couches, bean bags, etc. He obviously needs to do that and instead of head butting people he can channel that to other things.

Hopefully he will suprise you in school and be able to ahve his needs met early on. There are a ton of resources online and it sounds like you are headed in the right direction - information is power. I am sure that you guys will be able to navigate through life successfully - with this much love and caring going into each day, I'm sure that you can find balance!

[Elizabeth]

I really appreciate this series on Adam and SID. I have learned a lot. I see some traits of my daughter in this profile, DFEINITELY see myself, and am going to read both of those books.
Thank you!

[Sheila]

Fascinating series of posts - thank you Tertia. You have given me a great deal of insight into the behaviour of my own children (who are quite typical) and of some other children at their school. And your words make me reflect on some of my own behaviours as well. When I get migraine headaches I become very sensitive to noise and light, and to touch as well I think. The most ordinary things like the sound of my husband taking dishes out of the dishwasher become intolerable, and painful, and I over-react. It must be so difficult for people who feel like that a lot of the time. I hope the therapies and strategies you are using with Adam will be even more helpful in the next few months. Sounds like you have got some great supports for him. You describe the ways that he is wonderful, unique and lovable so well. I wish I knew you and your family in real life.

[Gina]

T...
Firstly, you are an amazing mom and an extraordinary woman! Go you!!!
Reading your posts on SID has opened my eyes...
I now know that I am not 'making it up' or being overly sensitive.
I know that I have SID. I cant stand anything on or near my neck, sometimes just the thought of pulling a top off over my head will send me into a complete spin. I cant touch anything 'fluffy', mohair blankets or fluffy jerseys... and hair... particularly my own, the minute it is just slightly dirty or not blow dried dead straight, I gag, and if i find loose hair on my clothing or bedding I freak, Paul has to clean off my hair brush for me.
What is really bizarre though is that I dont think i experienced any of this as a child, at least I dont remember any incidents from childhood.
Thank you for putting your and Adams experiences into words, it has truly opened my eyes and I now feel like I can move forward and begin to take control.
(((((hug)))))

[christa fairbrother]

Thanks for the series of posts on SID. We just started seeing an OT last month for our 14 month old son. Adam's SID issues and behavior sound exactly the same as our sons. The constant unintentional abuse of the pets and us was one of the uh oh signs that led us down this path. As well as the utter lack of sleep that you mention.

But it's not just a little boy thing, one may or may not believe in immediate gender differences, but the severity and intensity of it are not 'normal' little boy behaviour. I haven't met another mom who has to deal with the constant threat of pain from her infant. Nor have I met anyone else who's had to remove all of the carefully selected wooden toys because they became projectiles to launch at the pets. So thank you for mentioning your struggles with it. We are just starting day care and I feel your worry about how he'll do in school. His record is making 6 kids cry in 2 hours and that's with my hovering like you describe.

It's a big guilt loader for me because while my son loves attention and affection sometimes I just can't snuggle because I know I'll get bruised or bumped and it adds a lot of conflicted baggage to the already sleep deprived. And yes we cosleep too in shifts between my husband and I in seperate bedrooms so someone can get some sleep at any given time. I feel your pain.

My son is much younger than yours so I can't offer anything practical. I will just share that when the dog or cats start to vocalize their annoyance with him we make sure we say "Avalon (name of dog) says she doesn't like that" to try and help him learn that the pets are trying to communicate their needs. Hopefully it will work, I was worried he was going to call all animals gentle since that was our constant mantra around all things pettable but kitty was his second word so maybe he'll get it. The pets are at least sometimes gentle now.

Good luck! Christa

[lydia]

I would just like to say that your posts have made me finally understand that I too have always had SID. Unfortunately, when I was growing up 28 years ago, doctors and specialists really didn't know about it, so I had no help. I was strange, and had NO hand eye coordination, could not do sports, and rocked myself to sleep at night, but everyone just chalked it up to being 'quirky'. No, I had and still do have, SID. I have broached this with my therapist, and she agrees with me, and gave me some ideas of how to deal with my sensory seeking habits... I am so grateful, and so relieved. Nothing is/was wrong with me, it's my damn brain! I am so happy you are being so proactive with sweet Adam.

[Ms Porcelain]

Oh my friend... I have not had time to do much on line but I do come hear ocassioanlly to read 'your story'. It is absolutely fascinating and heart breaking at the same time.

I totally understand your fear of other people not being able to understand your intensely loving little boy. When you find yourself worrying too much, think about how hard it WAS and how much better it is now and how 'easy' it will be in the future.

Much Love :)

[Inga]

Thanks for sharing your story, Tertia! I really enjoyed reading about the challenges and improvements. Sounds like you have found a great team of professionals to help.

[Ann]

Tertia - I have that same little boy...four years, so dear to us. Our third child. We are going on nights, weeks, years of no sleep. He wants to hug us so tightly each and every night, like he has not seen us for weeks. Only another parent with SID could understand the love and fear we have for our boys. So many well wishers that think they can offer words of advice...only if you have walked in these shoes can you relate. We just want him to be happy...

[projgen]

I am catching up after being 4 months behind in reading blogs...

I was reading some of these 4 posts to Hubby, because he has a form of ADD and we`re always talking about recognizing childhood conditions. He pointed out that nearly every symptom of Adam`s you discussed, I experience. Right down to being so oriented - as an adult, I found my way back to my grandparents` old house, where I had lived as a young child, but hadn`t been to in 20 years. From the skin sensitivities to the routines to the sensory overload to the advance preparation - even to the perfect hearing and the "over love" (I tend to squish too tight when I'm hugging people/animals I love and have to remind myself to back off and be gentle). I've always thought I was just a compulsive, neurotic freak who goes off the deep end if anyone so much as thinks about touching my coffee cup (Hubby broke the handle a few years ago, and I thought I was going to have a breakdown. He fixed it. I love him). I'm now off to read more about SID in adults.

I think you rock, T. Your willingness to sacrifice for your kids, but even so much more for Adam's unique requirements, is amazing. You're more than making up for what you didn't know before his diagnosis. And please, keep posting in such details - not only is your depth of knowledge incredible, who knows how many people you may have helped?!

[Sally]

Tertia,

I found this at work yesterday. Thank you for sharing.

My son was recently diagnosed with SPD. I SO needed to hear the part about how you love something so strongly that it ends up being expressed as hard. I'm having a really difficult time with that right now and this gives me a new perspective on it.

Keep up the great work!
Sally

[Joleen]

My son is exactly like yours and does have SID. We have been going to OT for almost 3 months and what a difference. Because of the SID, I never thought he would potty train, but he has been out of diapers for 1 week now. On advice from a nurse, we bought the cheapest diapers we could so they wouldn't hold much and would not be comfortable. Sure enough, after about a week, my son was all for the underwear!! Really playing up how proud of him we are and what a big boy he is helped keep him going to the toilet when needed. As for the aggression, our OT suggested chewing gum (he just turned 3) and what a difference it has made. He's still aggressive with his baby sister, but with his cousins and friends it has helped enormously. Good luck with your son, OT really helps.

[trudy]

I read your story and i see my son. He is going to a psychologist soon because i believe he may also have SIDs or SPD. Again with him the excitement gets too much for him to the point where he forgets himself, where he is, what he is doing and has even had accidents even though he has been potty trained completly for two years. He was always this way as a baby too. He was walking at 8months and talking at 7. He had full sentences at 14 months. He is a very intelligent and loving young lad who gets very upset when he thinks he is getting given out to because we ask him to calm down. He is having difficulties focusing on his pre-school work ... more so then any of the other 12 children in his class, some of which are younger then him.

He even has an imaginary friend from the age of 3. He also over notices noises i wouldnt even hear and would also have a running commentry on what we are passing by. He is a non stop chatter and when there is nothing to say he makes noises.

I worry because the doctors in the country where we live have a very "he's just a boy" attitude that i think they wont take it seriously at the age of 4. Even though its very apparent.

Does this also sound like SID/spd to you?

[Selina]

I want to say that this was very interesting to read. My daughter, almost 6 yrs old, was diagnosed first by me then a psychiatrist when she was 4 and a half. I have known from the day they sent us home she wasn't within the social 'normal'. There was something different about her. She cried allot, had night terrors, didn't like to wear socks or shoes even as a newborn, wouldn't nurse, didn't like places with lots of people or commotion such as malls, restaurants, fairs or the like. Around 1 and a half she would pull jeans off they were itchy and she'd through a fit. It was very frustrating until I actually knew what the cause of this was. Knew that what she was doing was 'something' rather than 'nothing'. When she was two she became a big sister. With my second child I really could tell what 'normal' was and what differences my oldest had. They certainly have two different personalities but emotionally and physically their is a noticeable difference in 'normalcy'. My oldest does not know she is different. I do not tell her that she has special challenges but I do work with her differently with tantrums, clothing tags, socks, and shoes then I do with my youngest. Anyhow...It was great to read about your son, he reminds me so much of my daughter. He has a great mother and I can tell by your writing how very much you care for him and will help him get through his challenges. Thank you for sharing.