Talk to me about SPD

[WhiteHorse]

I would like some experiences from parents whose children have been diagnosed. My DS is 3.5 and has been challenging in many ways and I am trying to figure out how to deal with his "craziness."

[beachcomber]

Well. Um. It's hard to know where to start or what to say. My DD is 5 1/2 and has autism. SPD is part of her autism experience. She has both under (hypo) sensitivities and over (hyper) sensitivies.

auditory - she hates HATES loud noises like vacuums and crowds and banging on drums in her preschool class. She can often handle it if she knows it's coming but if it's unexpected, she completely freezes up (how she expresses being overstimulated at the time) then has massive behavioral issues afterwards

taste - hyposensitive: She'll eat baking soda or baking powder by the spoonful. It's uncanny. She LOVES very spicy or spice-rich foods like curries, Mexican, Chinese (Szechuan!) dishes. She eats pepper like it's a food group.

touch - hypo - She craves touch and constant stimulation through touch. She can't sleep at night - literally - unless she's skin-to-skin with me or her dad. It's driving us nuts after 5 years because she also sleeps like a windmil.

touch - very low sensitivity to pain. So she often hurts herself and has no idea how or when it's happened.

visual - hyper -  gets overwhelmed by too much information coming at her at once. Stores crowded with displays or racks or too bright are very hard on her. When she goes from inside in a dark room to a bright sunny day she has serious trouble adjusting. She hates crowds in small spaces.

[WhiteHorse]

Hi and thank you for your experience. My son is not autistic, but he is definitely "different" and although lots of people tell me "he's just a boy" I have already raised three boys and babysat numerous other children. These other people only have the opportunity to see glimpses of him outside the home setting. When he is in a new environment, he acts quiet and shy. He is clingy to me, and will screech desperately when faced with having to separate. But at home, he is a totally different child. With me in particular, he relishes getting "in trouble". For example, he will go from knocking the trash can over to throwing toys across the room to leaping off the furniture to physically attacking me, The next minute he will be crying to be "held". His physical neediness is relentless. He is in my face all the time. Verbally, he will repeat the same phrase over and over, he also has his own language that he intersperses with English. He has food allergies, and is low weight because of extreme pickiness in eating. There are other things, too many to list here. My biggest concern is his defiance, which I cannot get a handle on - I need to have the patience of 6 people to get through the day.

I have wondered if maybe he is just bored, he is not in preschool (we can't afford it) and for the last several months does not get to play with other children on a regular basis. Even on days he does play outside or play with kids, he still acts like the above in the evening. A few suggestions on MDC said to take a look at SPD, and investigate whether he has red flags for it. I think the red flags are there but could just be incidental. I am not sure what SPD looks like in other children.

[earthmama369]

DS (nearly 5) was diagnosed with sensory processing disorder about two years ago. We heard a lot of "he's just being a boy" and "he's just active" and all that. Well, he IS a boy and he IS at an active age, but he also has SPD. He does everything other kids his age do, but he does a lot of them more intensely, and he throws in a few quirks of his own. His big sister will go tearing through the house and flip a few headstands on the couch and run around. DS will tear through the house, bounce off the wall, and then spend well over an hour flipping headstands on the couch, over and over and over.

He has variable-type SPD, which means that he seeks and avoids and he's not particularly predictable. His lowest score on the "long form" sensory survey was in auditory filtering, so he often presents like a kid with ADHD -- trouble focusing, not following directions, seeming to ignore people speaking to him. If there's background noise or more than one person speaking, he can't filter out the extra noise to focus on what he needs/wants to. Needless to say, this can pose a problem in a traditional school setting. It helps to get close to him and touch him -- his shoulder, his chin -- to help him focus on your words, and to use visual cues like flicking the light switch when it's time to stop an activity and tidy up (for example).

At 3, sleeping and eating were our biggest challenges. He had an intense need for rhythmic movement and would wake up frequently, screaming, and wouldn't go back to sleep until we walked and rocked him down. Repeat ad infinitum. I timed him once and it took him three hours to eat half a sandwich. He'd take a bite, stand up in his chair, jump down, spin, climb back up, repeat. We hired an occupational therapist to come to our house for an hour a week. She played targeted games with him, worked on his ability to sit still long enough to eat enough to keep his blood sugar reasonably level, etc. Within a couple weeks, he was sleeping through the night with only one waking.

We've also worked with ds a lot on identifying and expressing his feelings with words (rather than biting or hitting), on reading his body's cues and finding safe ways to meet his sensory needs (like headstands on the couch rather than body slams into the wall), handling frustration and transitions, and celebrating the gifts that come with SPD. He's insanely quick at picking up certain physical skills, has amazing balance, and can climb just about anything.

Every person with SPD is different. I'm mostly an avoider. Noise, changing physical sensations, transitions, and social settings can be pretty difficult for me. I have a very different "SPD profile" than ds. It's been really interesting to learn about the different aspects of SPD and seeing how well ds responds to OT and positive reinforcement. Some things we practice over and over again for over a year, even, but I look back and I can see how far ds has come since we figured out what was going on. I'm really happy that he'll have a different childhood than I did because we have the words to describe what's going on and can help him feel more comfortable in his own body.

[Emmeline II]

I would make an appointment with a developmental-pediatrician/behavior clinic like this. A lot of this is like my ds at that age and you don't want to wait until K do get a thorough evaluation--we were also told that "he's just being a boy" or "he's bored because he's not in school"--school did not change anything. If your state is like mine and public pre-k is only for children with needs (financial or educational) I would push for an evaluation through Child Find.

You could also get an evaluation by an OT; I'd still do the other things but you may get the quickest eval/help with an OT.

IDEA Child Find Project

Edited by Emmeline II - 5/23/11 at 9:34am

[joensally]

From your description, something is going on for your son.  I always assume that kids are doing the best they can.  I agree that a full eval makes sense, as some of what you describe may go beyond SPD.  And every child with SPD manifests it differently, and it can change over time within an individual child.

Here's some free resources to check out:

http://books.google.com/books?id=0xVDUyNtfaYC&pg=PT212&dq=child+has+fun&hl=en&ei=IJPaTdHlAYmcsQPKqJiODA&sa=X&oi=book_result&ct=result&resnum=2&ved=0CEAQ6AEwAQ#v=onepage&q=child%20has%20fun&f=false

http://books.google.com/books?id=4IWJtCOkT0IC&printsec=frontcover&dq=sensational+kids&hl=en&src=bmrr&ei=KJLaTbi4K430tgPq9OiGDA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCkQ6AEwAA#v=onepage&q&f=false

http://books.google.com/books?id=DmUpCSlnmKAC&printsec=frontcover&dq=syndrome+mix&hl=en&ei=iZLaTfzNGpKmsQPhpayODA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDAQ6AEwAA#v=onepage&q&f=false

http://books.google.com/books?id=kPtmPoUAfXMC&printsec=frontcover&dq=labels+don't+fit&hl=en&ei=7pLaTe_5HY2usAOKrI2ODA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDkQ6AEwAA#v=onepage&q&f=false

[Linda on the move]

The Out of Sync Child by Kranowitz is what helped me figure out what was going on with my DD as well as giving me lots of ideas for helping her. A sensory diet, specific types of sensory input, can help VERY much. But what works best is a little different for all kids. We had to experiment around.

See if you library has the book or can get it through inter library loan.