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Archive for the ‘sensory processing’ Category

LP was at farm camp this week. It was a bit of a mixed bag. Overall, we feel very positive about his week there. The 4-H education center is resource rich. There were farm themed play materials, other children, animals, gardens, a tractor and even a teacher with a 5 year old son with SPD – no where close to LP’s level, but that would be really unusual to find. We were just kind of amazed at that small grace that he had a teacher who was comfortable with the ins and outs of SPD and was able to help in through transitions and new sensations.

So, that’s a lot of positive, combined with incredible unexpected grace. And yet, there was a teacher who was clearly made uncomfortable by LP and his issues. Her expectations were very high, probably too high for any child who had not yet been to Kindergarten. One day Matt found her arguing with him about whether something was ice cream or Kosher ice cream. She was mad at him for not believing her. She had to be right – of course, she was, but what four year old cares? Ice cream is ice cream is ice cream. Yes, I am judging her right now.
Clearly this person was uncomfortable with his choice not to ride the tractor. It was too loud, too high, too everything for him on that day. She had an extremely difficult time just letting that be. She harped on it quite a bit. Yes, she was judging him at that moment.

Each evening I struggled with sending him. He loved it. His other teacher was perfectly competent. The other kids were nice – they probably babied him too much because he has such a strong will that it most likely was not worth their time to make him share, wait, etc. I think he was the youngest child there & delayed on top of it. I both wanted and didn’t want this experience for him. I wanted him to experience life with no accommodations made just to see how we did. That was not the week we got. Life is not a controlled experiment. We got a group of empathetic kids who seemed to have got the message that he needed to be catered to, one teacher who didn’t “get it” and checked out (caught her once literally rolling her eyes at him – thanks, that felt good.), and one teacher who was competent, caring and knowledgeable.

I’ve no idea how to raise this kid without making accommodations, without spoiling him, without looking for the help we so desperately need. Yet, it must not always been LPs turn. He must rise to some challenges to grow. I never know where to draw the line, and it feels like we are always on the wrong side of it.

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Beck’s place is a nice place to read about parenting – lots of cupcakes, chores and the occasional rant. It’s just the type of reading I enjoy while my kids are napping and my tea is actually hot. These last two days her blog has echoed a problem that we are having in the neighborhood.

Apparently, now spring now comes with its own set of problems, like Social Darwinism at the playground. It seems now that all of us suburban parents are no longer confined to the interior of our homes, schools, daycares and work place, we have increased the likelihood that we will by chance encounter others, most particularly other people we do not know. All our social skills seem to be hibernating late into spring…perhaps never to be seen again. Could this be a some side-effect of global warming?

In the last week my children have been both mocked and rejected at the playground. I’m not sure they are old enough for anyone to take up the position that they should just suck it up.

Scene: my two year old sitting at the top of slide is addressed by the five year old climbing the rock-wall: Are you a scaredy cat?
I intervene: Let’s use nice words at the park everyone.
Five year old boy: What, I was just asking whether or not he was or was not a scaredy cat.
Me: Blink, blink, blink.
Little Bear: wheee!

Change Scene:
Little Puppy: hi!
girl at park: blank stare
LP: hi!
girl: blank stare, backs up
LP: she not say hi to me. why?
girl to friend: we don’t want to be here with him.
me: blink, blink, blink – let’s go on the slide!

Don’t even ask me where the mommies are. I really don’t have an answer. The thing is at one point I was a mother with just a four year. Pregnant and at the park, I let him roam and kept an eye on him. But in truth, I kept a ken eye and ear & had already raised him to use his kind words, to expect friendliness in exchange for friendliness, to take a turn, then give a turn. It was not until I saw him meet these expectations with regular success that I took my seat on the bench at the playground. My standard was not – is he big enough to go there without hurting himself, but is he mature enough, kind enough to have free reign here without causing harm or hurt to himself or anyone else. Was he an easy child? I guess by many standards he was. Did he mess up from time to time? Surely he did, but I was around to correct him, to hold the standard out for respect, kindness to others, especially those younger, weaker, less sure of their footing or confidence.
Now I have a younger child with a disability that leaves him less socially savvy than his peers. LP has to spend so much energy screening out stimuli he is quite behind his peers. Blissfully ignorant though is a thing of the past. Now he is consciously confused. He does not understand their games, he does not understand their rejections. In a crowd running, he does not see they are running from him – but I hear them and I know they are. The moms on the bench — yes, yes, you can see my jealousy so clearly here, I would be one of them with such a laid back two year old, but my four year old’s disability keeps me running after the pack – those moms, I know what they see: a crowd of children running and laughing. From a distance of just 10 feet, they seem to be a cohesive pack, the little ones trailing, the bigs ones leading, LP in the middle for he his long-legged and fast, but not aware they are all trying to get away, away from him. I hear their shouts, lost in the wind: here he comes, no this way, he’s back. How do they know already that he is not one of them? The speed of the running and the noise are stimulating to him, he takes great joy in the game, unaware of the rejection this time. There is a conference among the four and five year olds. I think for a moment that one of them may come forward and explain it all to him – that this isn’t tag or hide and seek, this is keep away, from you. No one in this age group has got the fortitude for this. They see my watchful eye. The scened fades.

I am lonely at the park. I run between keeping a watchful eye on LB’s monkey tricks (Can he climb that safely? Is there a big gap there? Stay off the rock wall! You are only two!) & LP’s new desire to interact at the park. It ought to be the perfect place for us & it is very, very not.

On our way home, both seem happy about the park. I feel like a fraud, peddling this icy playground experience in lieu of offering real friendships. So, we stop for icecream so the iciness goes down a little sweeter.

All this reminds me, that I owe you & Mothertalk a review of Road Map to Holland, by Jennifer Graf Groneberg. Its over here…

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I’m experience some impatience. I’m feeling over it. LP’s sensory processing system is all messed up. It’s so messed up that he exists in a little circle around me asking, needing, demanding that I process all his sensory information for him. And I’m just exhausted from the extra work of it & feeling over it.

Then there is all the all the information he needs extra help processing because his receptive language is lagging sadly behind his expressive language – almost to the point that one is amazed at how much expressive language he has & it is quite a lot for any child his age, let alone for someone who, apparently, isn’t understanding a good deal of what is being said to him. He fakes it pretty well a lot of the time, or picks up verbal cues (shoes=outside!). When he misses something, the frustration is extreme & loud. And I’m kind of feeling over it today.

All this is mixed in with what you all know, the normal testing of the boundaries and behavior learning curves any mother of a three year old contends with everyday. On top of which, we seem to have to contend with it loudly. The siren going off reaction often caused by sensory stimuli or failed comprehension has carried right over into “no, I don’t want to share that with my brother,” or “I tripped and fell on a stick and am basically fine, just upset.” It all sounds like a siren’s wail. You can only imagine how very, very over that I am today & everyday.

Tomorrow brings our second OT appointment – our third visit total. Our therapist, Christine, is a gem. She got him to get into this:

No one was more surprised than I was. He actually was doing some sensory-seeking behavior at this point. He had been allowing her to squish him with the therapy ball.
He then asked to hide & went under the platform swing – which he had already been swinging on. It was at that point that we got out the body sock, since he was trying to hide anyway.
He got inside the sock & seemed to enjoy both the hide & seek game and also the sensory input of the pressure of the stretchy sock & the feel of the fabric on his skin. As you can see OT for SPD kids is an indoor playground. Today is Sunday. One week is a long time between sessions. I’m feeling tired of looking at the long-view and want it all better today, but will have to wait at least until tomorrow’s OT.

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Yesterday was our big OT evaluation at the children’s hospital. LP was feeling non-compliant. A little bit oppositional perhaps. It was, in fact, his nap time, but I wanted the opening. I took it.

Apparently, I had made some sort of unconscious choice. I noticed myself helping him less – significantly less – than I usually do in less than familiar contexts. The therapist gave me some paper work – the long sensory profile, I only had the short one from the school system – I cheerfully ignored her attempts to get LP to comply with a variety of sensory activities. Actually, I was not cheerful. I acted cheerful, preoccupied with the paper and perhaps like a less competent parent than I truly am.

I think it worked. She was not able to complete all her evaluations, but she did complete most of them. LP was finicky, hard to transition from one activity to the next. He was somewhat defiant, wanting to control each game so he would feel safer. He wanted to play catch with the therapy ball, not roll it. He wanted to stand on the platform swing, not lie on his tummy. He did not want to color. He did not want to cut. He wanted to run (in progressively smaller circles until he crashed onto the mats).

She felt pretty comfortable diagnosing sensory issues. She gave me a little speech about behavior, which I smiled politely at, because, well, I had faked it a bit. I could have made him more compliant. I could have, but I chose not too. I can translate the world for LP. I can be his sensory integration system. Except I don’t go to school with him. I won’t be on the bus to Kindergarten in 18 months. 18 months is not a very long time. So, I didn’t play that role at the evaluation. The therapist expressed surprise that he is able to participate in a class setting without an aide. I indicated I believed it was due to being in a very small class, for only 5 hours a week and having an extremely experienced teacher.

Also, accommodations are being made. They expect less of LP. I’m have mixed feelings about that. In one sense, it is very realistic. It is important not to discipline him for behaviors he is not in control of – in another sense, it is discouraging. I am afraid that he is a regressive pattern, seeing how little he can/how much he can get away with, because he senses that none of his caregivers are 100% sure of what to expect.

We’ll hear back from the therapist in a week or so. She’ll give us our “results” which, I hope very much, mean a label and insurance coverage for the therapy. Then I can take my results to school and the district and we’ll go round the gerbil wheel once again. Not that we aren’t making progress. We are. We just spend alot of time recovering old ground. Yesterday’s evaluation was new territory. She asked me questions I’d not been asked before. She asked LP to do things he’d not been asked to before. I came home tired, weepy and just worn down from the effort of it all.

The month of March brings some small reprieves: no vacation days til Easter weekend, no Sunday night class for me, a visit to my mom for the Easter holiday, more light, a few more warm days and my mother-in-law offered to babysit so that Matt and I can go to the movies – nothing like escaping the house for a few hours to reset the brain, perhaps we’ll get some yummy food out as well!

By the way, Ralph Nader is 74. I think it is time we appreciate his nearly 3/4 of century of whatevering….

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Again. I hope. Our pediatrician – bless his hippy, helpful soul – hung out with me and LP for half an hour last week at his office and ran an autism screening (which we actually knew would be negative and was, but it is for our school system). He is sending us to an occupational therapist at the children’s hospital – who had an opening right away! So we are going tomorrow – for an hour and a half – and will hopefully walk out with a label. A label means help. A label means services covered by insurance or by school. I actually would like to label my child, please. Somebody pass me a sharpie.

In the meantime, I’m thinking of ways to put Ralph Nader in time out. Any suggestions?

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Oh my goodness, my google inbox spam filter was so full today. I’ve never even checked it before today (the spam inbox, not my real email. I am so internet savvy that I can check e-mail!) A number of you have emailed me -and apparently my spam filter thinks any email in response to a comment is something I would have absolutely no interest in. It is very sadly wrong.
Wrong wrong wrong, spam filter, you go to time out.
Spam Filter: No, I wanna be good!
Me: I know. I know.
Spam Fitler: I wanna go play!

Oh wait, that’s a different conversation. Bath time now. Children must sleep. It is vacation week here, and we are at home. Sigh. Tomorrow LP and I will go to our pediatrician and have a little come-to-Jesus chat about PTSD and Sensory Integration Disorder so they can better help advocate for him with specialists here, there and everywhere. My hope is we walk out with referral to a good occupational therapist who knows kids, PTSD and SID.

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Recorded after Valentine’s Day at preschool, celebrated by a mother-child tea.

My day was hard. Seeing LP at school sort of blew my world apart. I find I don’t spend lots of time with other kids his age. We both find it exhausting. Apparently, he does very well at school. However, today was quite difficult for me. It’s hard to see how very much he stands out in a crowd – which is one of the many reasons I avoid them. It is easy to become accustomed to his ways. I’ve had nearly 4 years to become accustomed. I don’t know what normal is anymore. It is hard to separate out the differences that are there because he is one of us (those 10-15% of people who are just different) and which differences are signs of him needing intervention.

There were about 40 3 year olds, plus their teachers and mommies and cameras. The children were to stand in a circle and sing to the mommies. 99% of the children did this. A few were distracted (“hi mommy! hi!”) or just kind of spaced out. LP was spaced out for a short while. Then he laid down in the fetal position. Then he stood up, when he saw me, and tried to defend himself against all the stimulation by making a loud noise, like a roar, and saying “I’m a truck mommy, I’m a truck.” I felt so bad for him that he is just having to cope with all this. He wasn’t even particularly miserable, it was just sad. I cried the whole time. When the singing was over, he was very happy to see me. We had cookies and juice and tea. He was very well mannered, sharing with everyone in sight. I was so proud of his recovery from the over-stimulation. Then it was time to go to the classrooms to play. While I was still in round 18 of negotiation, I looked up. The whole area had cleared. All the other kids transitioned no problem. This was about 45 seconds that had passed. We had to have two time outs and two threatened trips to the car to go home. We finally made it to his classroom.

He saw all the mothers inside with kids and asked to go home and watch a show (his safety net). I coaxed him in. He made a fabulous tower of blocks twice. He asked his friends to admire it – most of the girls were making a craft. Then he cleaned it up, independently. He then played with an alphabet puzzle. His skills in this area far exceeding his peers. The other mothers looked at me with wide eyes – they are all very nice, but no one expects the least emotionally mature kid in the class to know the ABCs better than the rest. He was frustrated because one child kept trying to put M in out of order. The puzzle was a zoo train. Each animal was on a train car. It was a perfect storm of love and interest for LP. The other kids were trying to have fun with him – and he wanted them to – but he struggled to keep his temper, because M comes after L and what’s a boy gonna do?
At one point he decided to crash the whole thing, but rallied and we finished it – even taking turns with Noah (who very smartly was checking the box of the puzzle to see which animal should come next, this way they’d both always be right.)

The other children dispersed. He cleaned up completely on his own without incident or whining (not to self for at home!). We played with a few other things. When it was time to go, he (and Little Bear who had spent this time in the backpack) completely melted down. I lost my temper several times before we got to the car and cried the whole way home. I cried silently with Dan Zane going on the ipod. My disguise did not work. Connected as we are, he knew of my fears, disappointments and frustrations. He badly wanted to please me. He stood on the doormat with his coat and shoes on and sang two of the songs from the repertoire of the day. The first was Jesus Loves Me. The second I will record here:

I wish I had a big pink box to put my mommy in.
I’d put her in and tap, tap, tap and take her out again.
(repeat faster, with adorable hand motions.)

I managed not to weep uncontrollably but to clap and be proud, as he was of himself. He accomplished the task – not in the original setting, but on his own terms.It was the highs and lows of LP today. After lunch he helped me make the cake. He’s never done such a good job before. We read the recipe like a map which helped him be extra patient with the steps. At dinner he ate 4 meatballs with red pepper sauce!!! And had a piece of cake.

Upon reflection several days later:

Thursday was not pleasant. It was quite painful. However, Thursdays performance at school isn’t a very accurate measure of his success there. It was not a normal day, in any sense. I look back on that moment when he stood up from his fetal position. Where on earth did he find the strength to do that? Where did he summon the courage to defend himself with karate gestures and truck noises against the onslaught of stimulation? “I’m a truck, mommy!” He was quite proud of himself. I wish I had clapped for him then. It was raw courage, to be sure.

Tomorrow brings the task of calling the pediatrician’s office. We need a referral to the occupational therapy center at the children’s hospital. This is the upshot of Thursday. Friday’s task was we found out the OT center took our insurance and that they do not have a long waiting list. If they can see him in the next week or so, we may be able to have an evaluation in hand at our next PPT. He was deemed ineligible for OT services in the school district because his school performance doesn’t indicate that he is impaired enough be his sensory defensiveness to need them. I see that. I get it. However, home, transitions, play groups, errands, libraries and museums are awaiting attention. LP and I need just as much help there as at school, perhaps even more because school is usually predictable. Thursday was a true anomaly, but much of the rest of our life is stimulating, unpredictable and stressful – at least that is how it appears in LP’s brain. I’d love to help him get to a place where he finds is stimulating, enriching and pleasurable, at least most of the time. Wish us Godspeed.

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