Worried

Trying to think things out when you’re sick is a bad idea. (I woke up with a sore throat and a cough and my ears hurt) But I can’t help myself. When I picked Beanie up at school today, the teacher needed to talk to me. Seems he is having some behavior issues, which, truth be told, is not a surprise.

Beanie hasn’t had an easy go of it, and while I may joke occasionally about him being a pain, there really are things going on health-wise that we haven’t figured out. I’m not talking ADD or ADHD or even Autism- I am (almost) certain none of those things are our issues. But I strongly suspect allergies, food sensitivity and sensory integration problems. We have an appointment in October, and it can’t get here fast enough.

When Beanie was born, everything made him cry. Everything. Nursing, my milk, formula, having his diaper changed, baths, towels, getting dressed, temperature changes, carseats, riding in the car, baby swings- you name it, he hated it. I’m being only slightly flip. Beanie cried, seriously cried, for months and months and months. The only time he wasn’t crying, he was asleep. And even that was fitfull and light. The only way he could fall asleep, was not in my arms, but swaddled as tightly as we could, in his crib, with a low light and a fan on. Then, he would sleep.

When he was about three months, we accidentally found a formula that soothed his tummy enough that he only cried about 2/3 as much- and we used it until he was 18 months old. It cost us $400 a month. The doctors did all kinds of tests, including an ultra-sound and ECG on his little heart. Nothing showed up abnormal, but my mothers’ intuition has always told me, something is not right.

Recently, my cousin in California called my attention to a book called Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You are Sensory Defensive in an Overstimulating World. I am plowing through it- it’s the first time I’ve ever read anything that sounds like MY child.

The thing is, normal things, everyday things that other people either assimilate in their environment, or else tune out, Beanie cannot do. Rubbing with a towel after a bath therefore becomes torture , tags or crooked seams in his clothes are not just the nuscence they are for most pre-schoolers, they become like a TV, Radio and Vacuum on all at once. Full blast.

The other night, he was in the bathtub, and both his brother and sister had already been plucked out and jammied, and I went in to grab Bean. He was lying on his back in the warm water, eyes closed, ears submerged, silently floating. In his whole entire life, I have never seen him so… so… relaxed. Ever.

Underwater, there was no sound, only his breathing. His eyes closed, there was no input, the water surrounded his little body, and he found peace. Maybe for the first time ever.

I started to cry, and left him to his peace.

28 thoughts on “Worried

  1. Do you have any sensory issues, yourself, Tracy? I do, and all my kids do. I pretty much constantly itch, everywhere. Right now there’s about 5 places on my body that itch. When my husband gets home, one of the first things he does is offer me a back scratch. I don’t like to be touched, especially lightly, but scratching is heavenly.

    My reaction to sensory issues is to shut down. A lot of kids act out. I would get confused when I’d read up on ADHD (my husband has it, but to me, it’s all just sensory issues), because I could relate so well to what I was reading, but my reaction was the opposite of someone with ADHD. I tune out; I over-concentrate; etc. I don’t get hyper. I get sluggish. No energy at all.

    Anyway, I’m glad you’re figuring out what the issues are. I wouldn’t be too worried. There’s things you can do to lessen his discomfort, once you know the triggers.

  2. Susan, Yes! You know, as I’m finding more out about this, I can easily see areas where I have issues.

    As a kid, I hated the lights in school, because of the buzzing they would make- and no one else even cared. Still hate fluorescents, too. I hate the high-pitched sound of the tv on, too. No one else can even hear it, but it makes me want to climb the walls. Smells and textures are bad for me too. I can’t take perfume of any kind, and to this day cannot stand to eat a marshmallow or jello because of the texture.

    I feel aweful that I may have given a more severe form of this to my kid. Did your kids get better as they grew up?

  3. I think it does tend to get better as you get older. I think I (and my husband, for that matter) may be more extreme than any of our kids—definitely with my auditory issues. My daughter used to refuse to wear denim, or any dresses with scratchy seams, but now she’s a teenager and lives in jeans.

    One sound that drives me insane is crickets chirping, and you just can’t escape it here!

  4. I don’t know if you want any more to read, but a fellow blogger has just written several posts about sensory integration issues. She is dealing with it herself as well as with her two year old son.

    I haven’t read through everything, but in case you’re interested, her URL is www dot tertia dot org

  5. Thanks, Glitter- I’ll check it out.

    Beanie has a lot of auditory issues, too, I think. In church when we sing, he covers his ears and acts out. He will even scream during the songs.

    The hard part with this, it seems so hard to pin down. People look at you and your screaming kid, and suggest you discipline them better. It doesn’t work like that- he responds well only to calm and quiet.

  6. ok tracy, light noises, ack, ANYTHING not right with my clothes made life tortuous (this is even true today). I cannot stand light tickling on the back either. I CANNOT STAND the fan, the wind bothers me to no end. maybe he has sensitive hearing too.

  7. Oh, sweetie. I feel your pain. My son has some sensory issues and has a label of “executive functioning” – meaning he’s high maintenance, which I KNEW withOUT the high price tag of a psychologist, thank you very much. Everything has an order for him, and things that don’t go according to HIS plan can turn him upside down.

    Best wishes for your baby. I know how hard it is to try and try to help them, only to hit brick walls.

  8. Silver lining: Sensory Integration intervention has progressed in the last decade. And OT is kid-friendly (and sensory helpful) intervention — he’ll love swinging in those big suspension swings!

    Hugs and best wishes.

  9. I treated an 8 year old with SI, and I’ll admit, she was a difficult case. One time, she was so worked up, I literally pulled the cushions off the couch (I was doing therapy in her home), put her on the cushion, put another cushion on top of her, and knelt on the cushion to give her some intense sensory input. It worked, she calmed down, and we could go on with the session. SI is not my area of expertise, but, like Deborah said, there has been a lot of work done on it lately, and it wouldn’t hurt to discuss OT services available at the school. In any case, having OT would get him qualified for an IEP (Individual Education Plan), which would make the teacher aware of what exactly he needs. Just knowing that Beanie needs some minor accomodations would probably make both the teacher and Beanie a lot happier.

  10. Oh, and you might want to get his hearing checked, too, only because if he does have hearing off the charts, that will definitely bug him. My hearing is much more acute than DH, and he makes fun of my sensory issues, too. Small, consistent noises (like the ticking of the clock) are intolerable to me, and yes, the crickets here drive me bonkers! Flourescent lights are hard, too, because I can hear the high pitches other people can’t. Beanie might have those same problems. It’s worth a trip to the audiologist. Your pediatrician might be able to recommend somebody for you, or make a referral.

  11. I really think a Mommy always knows best…I am sorry you are having a difficult time, but know that you are doing your best to help your son. October is almost here, and maybe then you can get some answers! Good luck and God Bless!

  12. I say do what you need to do, and the sooner the better. Trust your mother’s intuition. Find a doc that listens. Have you had him allergy tested? Allergies SUCK, but it’s better to know than wonder why his comforter is bugging him (my vampiress must be in cotton at pretty much all times).

    Good luck, hope you figure out what bothers him, and how to help him cope.

    And, give him lots of baths. Let him be peaceful.

  13. Heather/Deborah- what is OT? And how do I get him into therapy that he needs? How do I go about this with the Pediatrician?

    Hearing your stories is helping me. It’s helping me to know I’m not crazy- and neither is my child. Heather, I can totally relate to your couch cusion experience- I’ve never had to do that, but I have actually layed down ON him to calm him down. I don’t even know why it works, but it does.

  14. OT stands for Occupational Therapy. My son has “borderline Autism” whatever that really means. He has some sensory issues but mostly social and language. It is so hard to see your child struggle. There is a lot of help out there but it can be a long and hard road. I’d start with the school district and then check your insurance company to see what kind of therapy they cover- some companies are great some really stink. Good luck!

  15. T,

    I am glad you are starting to figure things out. I think this is a path worth persuing. There is another blogger (Diary of the Nello) who is currently on blog haitus (she broke her toe and has had a pain disorder ever since…) but her three year old son has this and she has lots of info. One thing she does is have a big rubbermaid tub full of beans that he will sit in (or stir or play with) and for some reason that tends to calm him…. anyway, she is worth talking to.

    Poor Beanie. I also remember not liking the buzzing of the lights and the high pitch of the tv. I am VERY sensitive to sound and it makes me feel like I want to rip my skin off. I can only imagine how hard it must be for him…

  16. all I can add is follow your inner mom. If you are “feeling” or “suspecting” or whatever go with it. Demand the doctors listen to you and test for the things you are wanting. I KNEW, my inner mom KNEW there was a hearing loss with #2, but the docs insisted I was “over reacting”. um, no. When they finally gave in an ordered the “expensive audiology tests” everything i felt came into the light and three years of torture began to subside for him.

    Every mom has been given that little voice to help her help her kid. Go with it.

  17. (((hugs))) Tracy! That must be so overwhelming for him. Poor Beanie. One of my good friends has a son with similar issues and, like Beanie, they didn’t know why he behaved the way he did for years. I’m so glad you’ve been able to recognize what’s going on and I hope you’ll be able to figure out the best way to deal with it for your family. You’re such a good mommy.

  18. Therapy Tip for anybody who wants to know: If you are looking for a low priced evaluation that a school or whatever won’t cover, try your local university to see if they have a speech therapy or audology program, and see you can get a student to evaluate your child. Graduate students are required to have a certain number of hours of treatment and evaluation, and I know we were always perfectly happy to do evaluations on anybody for anything, even if they didn’t want subsequent treatment. The going rate back then was, I think, about $150 for a 2 hour evaluation, and $30 a session (an hour) for treatment. When you are sometimes facing charges like $80 an hour for a treatment session, suddenly a college student doesn’t sound so bad. And students are closely monitored by supervisers, so you don’t have to worry about them being completely clueless.

  19. There is a book calle “The Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder”. Great book. There is another book by the same group called “The Out of Sync Child has Fun: Activities for Kids with Sensory Processing Disorder”. The activity book is great! Wonderful things that you can do to help them to feel calm. Occupational Therapy is awesome. Honestly, I would see if you can get him some OT even before the evaluation.
    We’ve been there… hugs!

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