My experience w/ Jacob's Sensory Disorders

Jessica - posted on 01/21/2009 ( 4 moms have responded )

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Number one: DEFINATELY read "The Out of Sync Child"! I gained such knowledge after reading this, and while I still have hard days, it helped me to understand Jake's point of view, and I learned to be more patient w/ him.

I have had horrible issues w/ Jake's sensory disorders. His problems are not only w/ touching and feeling things, but also w/ auditory, visual and oral. For example, he screamed bloody murder during bathtime, ever since birth. Whether it was the temperature of the water, the feeling of the air on his wet skin, or the actual feeling of the water pouring on him, I learned that it was actually painful to him, not just "annoying". Jake has never liked tags on his clothes, terry cloth towels, the slightest blowing wind, ANYTHING touching his head (which is hard because he can't sit up yet!), crowds of more than 3 people, bright lights, how the light in a room is affected by a ceiling fan w/ a light (it flickers...kinda like a strobe) and lots of other things. His palms and his feet are the most sensitive areas. He's got really bad oral sensitivity, and while slightly improving since starting speech therapy @ 10 mos,, we still struggle. He must have everything pureed. If it has a slight chunk in it, he gags and gags until I swipe it off of his tongue. He used to require thickened liquids, since he would choke, but that is totally over now! YES! However, he still hates cold juices and water. Since getting help at age 6 mos, Jake has come SOO far w/ bathtime, and actually sometimes enjoys it! OT, PT, and ECE have really made a HUGE difference in Jake's world of those mean old textures and temperatures! Even though it killed me at first, I pushed him to work through the uncomfortableness (is that even a word?) and sometimes, pain. We stayed a couple minutes longer in the grocery store instead of running out the door the second he started getting overwhelmed. I'll dim the lights slightly or plug in his favorite Christmas lights to look at (LOVES them) instead of turning off the lights completely. I will put his feet in buckets or trays of things (there;s a list of these "things" toward the end), or rub things on his hands. We started w/ very small steps. Maybe 20 seconds of putting his bare feet in a bowl of marbles or 30 seconds w/ a squirt of shaving cream on his hands. Worked our way up and BAM! you would not believe the difference in this child now, and his therapies only begun 2 years ago. Trust me....it was UGLY how upset he'd get and the whole day would be ruined. But now I will put some different things on the tray of his chair, and he will sit there and feel them, little by little.. and zone out, as if pondering the way they feel. I have a whole bookcase filled w/ different trays/bowls of things and toys. Here's some good ideas for home-made toys / dollar store toys w/ which you can work/play w/ your child:



A small bowl of soft pom-poms, bowl of marbles, a tray of dried beans, shaving cream, an assortment of different squishy water-filled toys from $store, clearance remnants of faux-fur from a fabric store, bubble wrap, hair scrunchies, different sized/textured balls, play-do, bowl of sand (LOVES the sandbox now), bowl of gummi bears and one of jelly beans, shredded paper/confetti from $store, visual stimulatory toys that light up, as well as a couple of things that made soft noises or music. I also have a communication switch that's textured and has a toy dog that can plug into it, but we don't even use that anymore. (If anyone wants it, let me know..it cost $135 in the "Abilitations" catalog, but I will let it go for cheap)



Talk to your child's therapists or doctors, but if you choose to try these things at home, take it slow, but keep on it. I believe that soon you will see MASSIVE improvements in your child's sensitivity. You have to play the very difficult role of Mommy, the bad guy therapist that makes me touch creepy things, but who better to help them through it than you?



Just wanted to put my story out there in case anyone had questions or needed some new ideas! Good luck

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4 Comments

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Rabaab - posted on 05/08/2009

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hi Jessica.. yeah you are a great mommy. My daughter also has development problems. From birth till now, she does not like having a shower. Eating was such a problem for her until recently. She had to go for speech therapy which was a great success. Now she goes for occupational therapy.. and she has a lady who comes and helps her with stuff, .. i mean if she cannot do anything she gets so frustrated.. and cries.. it is really hard.

Kelli - posted on 05/05/2009

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i agree with you my son Jaxx has a sensory disorder. his therapist recommended "the out of sync child" that book is amazing. it helped me so much. i noticed Jaxx was different from birth. we have worked very hard on de sensotizing him. i can't spell that but you know what i mean. we still have long way to go but the book brought me so much understanding of what was going on with him. people that have never experience this in their family have harsh opinions that i learned to block out. Ignorance is always voices its opinion. but the more people that we can make aware the better. i have explain to alot friend and family but when they said i was over reacting, i learned to just block it out. when you have a child with this disorder you develop a thick skin quick. i will write more later. my youngest is hungary. never a moment to yourself. but that is the way it is.

Jessica - posted on 03/24/2009

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Aww thank you Mashira! Just so happens I read your comment at the exact moment I needed to hear it! Thnx very much :)

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