Sensory Integration Dysfunction / Sensory Processing Disorder – Part 3

(I'm going to truncate this post, it is long)

I’ve told you a bit about what it feels like to have SID. What it feels like to live in a world where all the messages are clamouring for attention, all loudly, all at the same time. Where some of the messages actually cause you physical pain, they are so intense. Noise does that for me. It physically hurts. Sudden touch physically hurts. I think people think I make that up. I don’t. It really does hurt. Anyway, back to Adam.

When I first took Adam to OT, she said to me “look at his hands”. His hands are often away from his side, fingers splayed, palms facing outwards as if to ward off an attack. The OT said that it is because Adam is so sensory sensitive, that he is constantly waiting for the next sensory insult. His body is always hyper aware that something might accidentally brush him, or knock him over. So he is always hyper aware, hyper vigilant.

I am going to mix things around a little, because I have so much to say on this! From my own personal perspective and from his.

One of the biggest learnings through all of this has been understanding more where I come from. Why I am the way I am. When I grew up there was no label for this. You were just quirky. When I saw that photo of myself when I was Adam’s age, with my fingers splayed, I felt a little pang for the child I was.

The whole ‘waiting for the sensory insult’ thing makes so much sense to me now. I HATE being touched accidentally (even on purpose sometimes), I always have an extreme reaction. Now I know why. I go into overdrive on the fight/flight response and unfortunately I instinctively choose ‘fight’. Which is why I fractured Marko’s ribs (by accident!!) when he poked me in the side. The lashing out thing is instinctual.

Unfortunately, that is something Adam does as well. He lashes out when he is under ‘attack’. And while I understand why he is doing that, it is not something I want him to do. He can’t lash out at other kids or other adults, he needs to learn to modulate his response.

Something I haven’t done, is explain what happens when we go into sensory overload. I like to think of it like a temperature gauge or rev counter in a car. Sensory input is like putting your foot on the gas pedal of the car. You push the gas and the needle on the rev counter goes up. As the revs go up, you know to put your foot on the clutch (if you are not in America. If you are in America, the car does this for you *grin*) and change into a lower gear (i.e. you tune out some of the message, you process the other ones, you respond appropriately). The revs go down, the engine quiets down and hums along at an appropriate modulation. With Adam, the foot stays on the gas pedal. He can’t seem to take it off and gear down. He goes into the red. And his gas pedal is so sensitive. The slightest pressure sets it off.  I am not talking about having a tantrum. Those are different. That is what ‘normal’ kids (like Kate) do. This is a freak out that borders on hysteria. It is a reaction based on fear, not on anger or frustration. One of the tricky things for mothers of SID kids is to distinguish between what is normal two year old tantrum behaviour, and what is SID overload stuff.

When I am around, I can see when or what will set him off, and I intervene. I jump in before he gets into the red, or I help him get out of the red if he has gone too far. I do this by taking him out of the situation, going to a quiet place and holding him tight (deep pressure). I talk softly to him, telling him it is ok, I am here. I hold him until his engine is able to idle on its own.  Which is a surprising quick process by the way. I am always amazed at how quickly he is able to come back down again.

It all sounds good and comforting that I am able and willing to do that for him.  The problem is that I am so super sensitive to his reaction that I hover. I jump in as soon as I see him hitting the red.  I stop him from getting over hysterical. Which isn't good. He needs to learn what it feels like to hit the red and develop skills for coming down himself. To calm himself and respond appropriately. But it is so, so hard for me to see him stay in the red. Every fibre of my being screams out to save my child.  But I am trying, I promise.

Going back to the routine / preparedness thing I discussed in my last post.

Sensory kids don’t do well with transitions. Whereas with a ‘normal’ kid you can sweep into the room and say ‘ok, leave those toys, we are going to the shop now’, a sensory kid needs warning and time to prepare himself for the change. Sensory kids do not like surprises. (I HATE SURPRISES, HATE!!). Changes and surprises cause all of us to have a little bit of a stress response, a mild spike in adrenalin or cortisol – the fight or flight response. But then our body quickly says ‘hey, I am not going to get eaten, it is just a new visitor / new activity / surprise’ and we automatically go back to ‘normal’. Sensory kids don’t. They spike and they find it difficult to come back down to normal.

So you prepare them as much as possible. If I know we are having people over to visit (even if it is close family or friends), then I prepare Adam. “Oma and Oupa are coming to visit!” and then he is totally cool with it. He looks forward to it and is excited. But if he is busy playing and Oma and Oupa suddenly appear, his initial reaction is not exactly welcoming.

Preparing Adam for what is to come has been one of the best pieces of advice I ever got. It helps so much. As an example, going to the doctor used to be a total nightmare. Adam would FREAK OUT. I had to hold him down. So I never used to tell him until the last minute. After leaning about the preparation thing, I started making up a story about the doctor. I would tell him way in advance we were going. Then I would tell them the story about what happens at the doctor. “The doctor looks in the one ear, then the other ear, then he listens to your tummy, then he….” By the time we get to the doctor Adam knows exactly what to expect and is totally cool with it.

Funny thing is if we go to the doctor now, Adam tells the doctor what to do. “Doctor, you sit here, I sit there. You must listen here, and look in here”. And he reminds him if he forgets something. Works like a charm.

The same goes with the routine. It is amazing how much Adam lives for the routine. He never questions nap time or bath time or anything like that, because they are part of the routine. Everything has a place and a time. There are inside clothes and outside clothes. There are things you do first and things you do second.

Unfortunately there is a downside to all this routine stuff. Adam doesn’t do well when you change the routine around. We usually have supper first, and then a bath. I once bathed them first because they were so muddy and he refused to eat supper afterwards. He wanted his bottle because that is what you do after the bath. Have the bottle. And macaroni cheese is what you have for supper. Nothing else. And that is clearly a problem.

So here is a request for advice from other SID moms and professionals – how far do we take the routine? Does he need the routine and predictability more than he needs to learn skills to deal with transitions and change? Is he still too young to take away the routine? I feel he needs it right now, but I also know I overcompensate because of my own ‘issues’. Maybe I should push him a little more. Force the transitions so that he learns skills to cope with change.

This need for order and predictability presents other problems too. In order for Adam to feel safe and secure in his world, he not only needs predictability, but he needs permanence and a clear sense of order. Which translates into objects as well. All kids struggle to share. Adam really battles to share things that are labeled his own.

If I buy 10 cups, all different colours, he will gladly share any one of them. Except for the one I said belonged to him. That is Adam’s cup. Mommy said it was Adam’s cup and so it’s Adam’s cup. No you can’t have it because it is Adam’s cup. How can you take the cub that belongs to Adam? It is Adam cup. If you take Adam’s cup, then nothing will make sense. Again, this is something that will improve with age and maturity, I have no doubt.

The educational psychologist I took him to asked me a very interesting question the other day. She asked me what he is like with his sister, and I said he is totally fine with her. I can see that he is relaxed. He has none of that splayed finger thing. And she said it is because he knows his sister, she is predictable. And even though she beats him up and shouts and pushes, he knows what to expect from her. He doesn’t need to be prepared for the unexpected sensory insult.

As he gets bigger, better and his ability to modulate his sensory input improves, things get much easier for him and for me. As I knew they would. There are times when it is worse (when he is tired, or when there has been a long time of sensory overload), but on the whole he had improved hugely. Everyone has remarked on it.

I am going to end this post at this point because tomorrow I want to tell you a bit more about the good (there is good!) and the not so good bits we are currently dealing with.

Comments

[Bianca W]

This is so interesting. Thank goodness Adam has such a divine mom. I have to tell you, in my opinion, it is always best to keep the children in the loop. My nearly 3 year old son does not have SID, but even he can be thrown off if he is just dumped into a sitation he was not expecting.

B

[Meg]

This is very interesting, Tertia. Thank you.

[KateOmega]

You're an amazing mum.

[Carrie Jo]

Regarding the food thing: Explain to him that it's important to eat other things for dinner, so maybe you can develop a menu for the week and he can at least have seven different dinners each week, but he will know which is night is mac n cheese night, which night is chicken night, which night is soup night or what ever.

[Julie]

Also re the food thing - have you tried to let them help you make the food they will be eating - used to work like a charm - easy stuff like "Pita Pizzas" - just pitta bread, they can spread the sauce on, choose their toppings and then you just grill them..... might work....

I'm sure you will still cover this, but I'm curious to learn more about the treatment - is it purely OT (weighted blanket, brushing etc) or are their meds involved / optional? (Just curious as my son was ADHD as a child and I know I got a lot of resistance to meds for him from people who didn't have to live with him and see his struggles first-hand).

[Veronica]

This is amazing stuff to know. Thankyou for writing about SID otherwise I wouldn't have known anything about it.

You are doing an amazing job and Adam is so lucky that you can relate to what he is going through. I will be waiting eagerly for part 4.

[SheBee]

Julie is onto something with that food thing, I think. I know how much it helped my brother when her refused to eat anything other than 2min noodles for dinner.

Helping make their own food keeps them interested and involved in the process. Possibly, throwing in a different meal every night could be too alarming, so if it were me I would say mac n cheese 3 x week, the other 2 nights would be diversified. Over time, weaning could happen...

I dunno. I'm not experienced first hand with this, but grew up with it around my four brothers.

I am absolutely fascinated by this, T!

[Desiree]

This is so interesting. My 14 yr old son has similar issues. He refuses to touch buttons, press studs etc...clothes with these items on them are a no-no (except school uniform because we can't get around it) and even the duvet has to have it's press studes hanging off the end of the bed or be taken off completely. any extraneous buttons sewn inside his school clothes (that serve no purpose) are removed too.

[Coral]

I would suggest that you serve another food WITH the mac and cheese, maybe not on the same plate (that might freak him out a bit), but nearby so he can see that you can eat other food. Does Katie-EE eat other foods? (I love that Katie-EE thing, is she still saying it?)

[Heather]

Simply amazing. You're fan-damn-tastic. I think you're right to want to protect him "so much" at this age. I feel that toddlers are resilient, but fragile at the same time. They're already changing so much within, why make it harder without, you know? I think your approach is fine - ease him into things, help him now, and then as he gets older and more able to process, etc., help him learn ways to cope on his own. That's just my $.02 :-)

[liz]

Adam is very very lucky to have you!!!

We have a little boy (who is 3) in a playgroup with my sons who has SID. His mother has explained to all of us what it means so we can help make sure his playgroup buddies do everything in their (3-year-old power) to help him. But your series of posts has been extremetly helpful in really making me understand.

Oh -- and for the record -- I am an American that drives a standard 5-speed. So there...we don't all have the car 'do it for us'!!

[Jo in Utah]

Good writing! Parening a kid with extreme sensory issues, I appreciate your story and tips. Thanks.

[colicmommy]

My son has mild SID. Something that helped him deal with the fact that we do different things on different days (say, preschool only on M, W and F but not on T and Th) was a "week chart". You draw seven boxes on a BIG peice of poster board. Then you label the days. On each day, you put what goes on. You can write the same things on each day that happen each day (get up, breakfast, etc) and you can write the different things (preschool, playgroup, OT, doctor appointment, Oma visit). You can use pictures too, to help. You can try putting seven different dinners on the week chart too. That way Adam can see visually that even though each day may be a little different, there's still a routine. And, the week itself is a routine that repeats over and over. Preschool ALWAYS happens M, W, F but not T, Th, etc. Each morning, you can look at your day on the week chart. You can say, "Today is Monday. Let's look at the chart. Today we will do this, this, this in the morning. Then we have X food for lunch. Then we have nap. Then we do this, this, this in the afternoon. Then we have supper of X food. Then we have bath. Then bottle. Then bedtime." You can visit the chart throughout the day to help him remember what's coming next.

This worked WONDERS with my son.

Also, the timer. You can say "In five minutes, we are going to the OT." and set the timer. He can see the 5 minutes go down. With some extreme SID or ADHD kids, they need the timer for EVERY SINGLE transition, but I doubt Adam needs that.

In regard to your question of making him cope, backing off, forcing him to learn skills, my humble opinion is "NOT YET". My son is now 4.5. He's learning skills now. He's learning them on his own and with our help. At age 2.5, no way man. Letting him get into the red and not helping him out and seeing if he could do it himself only resulted in him feeling bad about himself, him acting out, maybe even other kids getting hit, and everyone feeling stressed. He does have to learn, but not when he's 2 or 3. Normal 2 and 3 year olds can't even keep it together really!

[Nicola Theron]

My son (4yrs) has mild sid/spd too, can't handle loud noise (July 4th is always a nightmare here)and of course he gets it from me. He goes to a Montessori pre-school and I can't tell you how it has helped him. If they have a Montessori close by you I would highly recommend one. Have you read "the dysfunctional child"? v.good book.

[Jessica Hoffman]

Tertia, you certainly have done your research. I didn't know Adam has SID. Zack has changed so very much in the last 3 years. At five, he has grown out of his ASD label, tested 2 years ahead intellectually, and grown out of most of his SID issues. Keep doing what you are doing...
Have you thought about an integrated preschool program? Best thing we ever did for Zack and Sammy.
Take care,
Jessica

[21stCenturyMom]

So very interesting.

I would imagine that how you handle this in terms of giving him the lead on calming down and dealing with change should be geared toward preparing him for school. That will be the first time in his life he will be in a situation of constant change where he doesn't have you or Kate or Rose or Marko to help him out.

How you do that is a mystery to me so no help there.

BTW - some people in America do drive cars with manual transmissions (a clutch) but mostly those are sports cars :-)

[Michelle]

When he goes to school or preschool, please meet with the teacher ahead of time and give her this information. She will not always execute the system perfectly as a mother would, but she will do her best to assist Adam with functioning in a group setting and being able to predict what will come.

When I have taught young ones, we used images from "Board Maker Software" to put forth a schedule/plan in the morning of how the day would go. We had print-offs of the common tasks, they were laminated and had magnets on the back of them. At the start of the day, we would sit down with the child, and together put up the sequence of how the day was going to go, Because they were images, not words, no literacy skills were required. This allowed us to change the order of events, and it also gave the child a feeling of control of their day.

How does Adam handle choices?

[Kristine]

I echo the comments that suggested timers and picture schedules. We have used some picture schedules that allowed us to change up the order if we needed to (small pictures with velcro on the back). Helped with transitions.

Also, at this point I wouldn't worry too much about getting Adam to learn to cope on his own. He's still awfully young. Some of that will come with maturity as he gets older, especially when he starts to sense other kid don't always react the way he does. And when you do start working on getting him to adapt better, do it slowly, one thing at a time.

Also curious what OT interventions you have used, such as brushing and weighted blankets, etc.

[Caroline]

This is so interesting. You have done such a great job of weaving together "the facts" with examples from you and Adam. Adam is so lucky to have a Mom that understands him so well and took the time to get him help from professionals when so many other parents might have ignored the signs and labeled him a difficult child. Thanks so much for sharing this information!

[spacemom]

As an adult, I can also say that I have SID and I recognize it in my oldest (also a difficult baby). I do have the mall reaction that you described in post 1, so I don't shop around holidays....

I am glad you have found an answer to why Adam is how he is.....

[Katie]

Tertia, re: the routine and if you should change it up a bit, perhaps you could start with something really small and work your way up. My 2.5-year-old son has autism, which is often accompanied by sensory issues and a need for routine. I find that I do give verbal warnings about what we're doing next, and if it's something off routine, I give a running commentary and remind him of the change in routine several times (this is also because of his language delay). Anyway, about trying something small: maybe if you normally read a book together each morning, instead talk about how you're going to play with toy cars instead... something like that. Then the next day would be a different activity, but nothing that hugely changes the day's outlook. Just a thought! :)

I also love the picture board idea; my son is a very visual learner, and if Adam is too, I'll bet it would work well.

[juliag]

Here's some assvice. I have no background in dealing with SID kids at all. But I have observed that some kids (and adults) seem to need a lot warning about what is coming.

The fact is, surprises will happen, right? Maybe as Adam ages you can start talking about surprises and changes of plans. Say stuff like "sometimes there are surprises and that's okay". As he gets more of a sense of abstraction this might help...to hear over and over again that surprises can be a good thing (or a neutral thing). He has a predispostion to think that surprises are always bad, you know? Just hearing something over and over can help. And then when something surprising does happen (like the grandparents drop in for a visit) you can say "aha...this is what we were talking about...a GOOD surprise".

Probably assvice. I really don't know anything about this...just my first instinct.

[Emmie (Better Make It A Double)]

Awesome, stuff, Tertia -you are clearly doing just what Adam needs. What I find interesting is how a lot of people who don't have "classic" SID are still not exactly "neurotypical" either. I'm one of those people, and so is one of my twin boys, even though both of us function well. I use some of the same tools, and they help us too. I think a lot of parents who have kids that don't need/qualify for OT might still benefit from this knowledge. Thank you for sharing your experiences so thoughtfully. Thanks also to your commenter -I think I'm going to try that picture board idea.

[Meg]

A thought - you might want to find out what learning style he has. I think (though I am no expert!) that most people who have SID/SPD and feel things intensely are probably kinaesthetic.

I am fascinated by this and I have also found that knowing my own style has really helped me understand why I prefer some things, why I find it so much easier to understand information if it's presented in a particular way, and so on. I'm kinaesthetic, though if I have SID I only have a VERY mild version of it. There's visual (looking), auditory (listening) and kinaesthetic (feeling). Being strong in one doesn't mean you can't learn in another way, but it can mean it'll be more difficult for you. If you can work out what Adam and Kate are, you also might find it easier to communicate with them generally.

Go here if you want a look: http://www.usd.edu/trio/tut/ts/stylest.html

[angel]

"...how far do i take it..." is a question i often have to ask and answer with damien's ADHD. it sounds so lame when i try to explain it to other people, and the "concessions" i make for him at home sound like i'm babying him...
so how far do i go to "keep the peace" for him and for everyone, and still let him learn his life lessons.

[dawna]

Remember this mantra: You are doing everything right. At least, thats what it seems to me. You ARE teaching him to calm down, you are teaching him that that things you do(tight hugging etc.) will be things he can do for himself as he gets older. Right now he needs your help to learn these things. So stop worrying. And every "play school" has a kid that isn't so called "normal" and as long as the teacher is prepared, she can help the other parents be prepared and no big deal! If nothing else, they will decide he's not ready for that step and he can try again later. :D