Saturday, April 21, 2007

Sensory Issues and Preemies

The "sensory issues" label is known by a few names...

Sensory Integration Dysfunction
https://mmm1106.verio-web.com/sensor/faq.html

Sensory Processing Disorder
http://www.sensory-processing-disorder.com/index.html

There is a comprehensive symptom checklist here.

There is some controversy over whether or not this "disorder" is real. I can tell you first hand, beyond a shadow of doubt, it most definitely exists and can be debilitating for both the preemie and his/her family.

When Paige was a baby she cried almost every waking moment. We asked docs and they would just tell us that she had an underdeveloped nervous system. It was so bad at times that, as soon as hubby came home from work, I left the house. We felt incredibly bad for her. Nothing helped. She hated being swaddled. She hated being hugged and would freak out with any sudden noise. You may as well forget about cutting her nails.

As she got a little older the crying lessened but did not go away. Her OT taught us how to do The Wilbarger Brushing Protocol. http://www.pbbkids.com/the_wilbarger_brushing_protocol.htm
I was skeptical (I don't tend to buy into therapy that is "outside of the box") but was willing to try anything. It helped a lot but I could still see that she was very different than other babies I had been around.

We continued to ask docs about her behavior but were always told non-helpful statements like, "Oh she's a fighter. That's why she is alive."

During her toddler years it became very apparent that she had major issues. We could not hug her unless she hugged us first. We could not touch her unless we warned her first. She would smear food all over her body. She jumped constantly. She could not sit in a chair and eat, she had to hop while eating. Cutting her nails was a nightmare for all involved. If she was playing outside and there was mud anywhere within her sight, she would smear it all over herself before she could play. Noises... I literally still get tears in my eyes when I think of the pain (yes... pain) she experiences when exposed to noise. One day her and I were shopping. I was pushing her in the cart and I was singing to her (she was about 3-still was very delayed in speech) when a very long announcement was made over the store's loudspeaker. She immediately covered her ears, started crying and said, "mama help me". I took her out of the cart, covered her ears and we sat on the floor crying together.

At every single doc visit (pediatricians, specialists, therapy, etc) we mentioned our concerns. Not one person mentioned sensory integration dysfunction. I felt helpless. No matter what research I did on my own, I could not find one bit of info that applied to Paige.

It all changed one day when my Dad and I took her to the mall. She was about 3 1/2 years old. She was jumping along side of us when her hop turned into a sprint. My Dad reached out and grabbed her shoulder. No big deal right? One problem. He forgot to warn her that he was going to touch her. She immediately dropped to the ground and started scratching her face into a bloody mess.

That was it. No one was going to dismiss my concerns anymore. I spent hours on line, every day, trying to find a name for this monster that was had a grip on my daughter. I joined a parent based support group where most people used to put their child's alphabet soup of diagnosis in their signature line. I noticed the letters "SID" in one post. Knowing the child had not died of sudden infant death syndrome, it intrigued me to search with those letters. Up popped a few sites about sensory integration dysfunction. I cried while reading the symptoms. My daughter had most of them.

I found a local OT who specialized in SID and begged for a quick appointment. After our initial consult she said that Paige's case was the worst she had ever seen. I sure wasn't surprised. She put her in a swing, like the ones used with Autistic kids and Paige smiled the biggest smile I had ever seen. After the swing she put Paige in a weighted vest (only 1 pound weight). Paige actually SAT in a chair through the rest of the first therapy session.

Below is a list of her symptoms at the time of the start of therapy (she was 3 1/2 years old)...

sensitive to loud noises
hears well but does not listen well
shouts or screams for no apparent reason
sometimes acts as if in her own little world
very noisy child
likes to press ears against TV, speakers
likes to listen to loud music when she is in control of the volume
cups hands over ears with sudden noise
hates haircuts, hair washing, hair brushing, cutting nails
bangs hands on tables and walls to create noise
cannot sit still
high tolerance for pain
always removes her clothes
stuffs too much food in mouth
dislikes being touched
delayed in toilet training
heavy walker, stomps her feet
rejects being held unless it was her idea
loves VERY strong smells
flaps hands around eyes
rolls head from side to side
loves playing in water (abnormal attraction to it)
enjoys things that spin or turn
loves to be spun around
everything must be in order (shoes all in a row, etc)
loves to open and close doors and drawers
loves mirrors
can't sleep unless blanket is very tight
smears food or non edible liquid items on arms and legs
trouble going up and down stairs
turns upside down many times during the day


We continued in therapy for a few years. I can honestly say that I do not think there is a cure. I've heard some people tell stories that they were cured after a few sessions. I don't believe this is possible if the child has true SID. But, what therapy did give us was a resource of ideas to help Paige be able to function in the world. That's the key. I've had friends and relatives read over the symptoms and say things like "oh, I have some of those symptoms and I don't need therapy." I feel that the determining factor for us was that SID completely interfered with Paige's ability to function in society. Completely.

She is 8 now and still has major sensory issues. As a matter of fact, she still has all of the issues that were listed above. But, she can now function around them. Most of the time.

There is more information out there on SID now, than there was when Paige was little. I am so thankful for this. For years, educating parents and docs about SID was a passion of mine. I passed out information sheets to every doctor that we visited. A few times I had docs say, "I just had a parent asking me about this." or "I just had a parent who was concerned about her child because of some of these symptoms."

If you are reading this, as a parent of a preemie, there is hope. If you can find a SID certified OT, that would be a great resource for you. There are some wonderful books that have been written about this disorder. I have only read the books by Carol Kranowitz but have heard parents speak of other authors who have written on the subject and they felt their books were helpful. Please feel free to ask questions here if you would like some ideas of what has worked for us. If you don't feel comfortable doing so, please feel free to email me privately.

If you are reading this and you are a physician, please know that there are an incredible number of preemies that are affected with this monster. Inform the parents that they are not imagining it all. Let them know there are others like them. Inform new parents of preemies on what to look for in the future. The earlier the intervention, the better.

42 comments:

Chris and Vic said...

Stacy, I wanted to be the first to say that this is an incredibly insightful post! It will, no doubt, be an AHA! moment for many parents (and healthcare professionals, though they may not care to admit it).

This used to be "sensory defensiveness," in OT parlance. It may have begun in the NICU, where some babies get a sign, "Minimal Stim" above their beds. They have been sensitized to loud noises, abrupt if not rough handling, bright lights, at a time when they were vulnerable due to prematurity or birth injury. (Helen would have a study or two to follow an assertion such as this---but I know this is true from my 18 years in the NICU environment.) Heidi Als would further assert that such things as weighing very immature babies and painful procedures, which drive up their blood pressure, leads to PVL and brain bleeds, which compounds their sensory issues.

The endo-tracheal tubes (ETTs) by which they are attached to the ventilators gives them oral defensiveness---they become poor or finicky feeders. Textures make them crazy---in their mouths as well as on the palms and fingers and soles of their feet. The lables inside the necks of their clothing drive them to distraction.

You cannot trim their nails, nor can you comb nor cut their hair.
My son will be 12 this week, and he now has zits, which you cannot wash nor touch at all.

They have abnormal responses to pain---either under- or over-reactions, or both by turns.

They are inconsistent as you point out, reacting with strong aversion or strong craving to noises, touch. deep pressure.

Like ADHD kids, they are always talking and moving, bouncing, jumping, bobbing, fidgeting. My son is, at this very moment, flipping a matchbox car into his palm repeatedly. He has a rather large callous from doing this for several years on end. I once took him to the pediatrician, when I first noticed the callous forming, wondering what kind of "growth," perhaps malignant, it might be. Duh! It is a _ _ _ _ _ in' overuse injury!!!!!

My son cannot modulate his voice. He is always too loud. He cannot modulate his reponses to noise or other noxious stim, either. He overreacts (when he is not under-reacting.)

He doesn't have a sense of social distance--he is always "in your face". My son repeats phrases/ideas over and over--stereotypic behaviors.

My list goes on and on, with some variations on the themes as he gets older---as does yours, Stacy.
Some of Vic's behaviors look like autistic features, some look like sensory integration dysfunction.

Vic can now walk barefoot in the grass or in the sand---it took a long time. Vic still doesn't chew rice--he swallows it whole. He puts dangerously large pieces of food into his mouth.

Vic covers his ears even when the noise is not loud--the dog slurping water from his water bowl makes Vic nuts, and he runs over to HIT the dog--poor confused dog is endlessly tolerant with Vic, thank goodness.

Like I say, the list can go on and on. Endless variations. Endless surprises, and mom/dad jumping in to put out fires, avert social disasters, sometimes avert violent responses from our kids.

The teachers and therapists want lists of behaviors to watch out for---not possible. You have to be hyper-vigilant because I sometimes cannot see what triggered Vic's aversions, prompted a near-violent response.

Chris and Vic

Helen Harrison said...

Ed has many of the symptoms you've described here, Stacy and Chris. (Ed also has musical and math "savant" skills.)

*Many* children described on the Preemie-Child list have the symptoms you've both described, as well.

I don't think professionals deny the existence of these symptoms, only the characterization of them (primarily by occupational therapists) as a separate disorder -- "Sensory Integration Disorder" that OT is uniquely able to treat. (Studies of OT do not show this to be true.)

These symptoms are well-known accompaniments that occur in varying degrees with certain types of brain damage or abnormality -- from strokes, head-injuries, tumors to autism and schizophrenia.

I think the appeal of the "sensory integration disorder" label for some parents and therapists is that it does not necessarily imply brain damage. To me, it seems like one of the euphemisms like "developmental delay" that implies a treatable condition that the child may outgrow. It avoids use of the "A" word -- "autism."

Nevertheless, here are some excerpts from two New England Journal of Medicine articles by autism specialist Isabelle Rapin, MD, on autism spectrum disorders.

I believe these articles are available in their entirety at the NEJM website.

Rapin. Autism. NEJM 1997;337:97-104.

Rapin. The Autism-Spectrum Disorders. NEJM 2002;347:302-3.

Note: Since these articles were published, new evidence (Skranes et al. in Brain 2007 and Thompson et al Brain 2006, which I think I've already fully referenced on this blog, have linked brain damage/abnormality in preemies to the symptoms of autism.)
******
From Isabelle Rapin's NEJM articles:

"Few disorders seem more confusing than autism. Common stereotypes — of a severely withdrawn, mute child with ceaselessly repetitive activities and an averted gaze or a freakish-looking, inept, mathematical prodigy — do not accurately reflect the broad spectrum of autism. Far from being emotionally ill but otherwise normal, persons with autism are now considered to have one of a group of developmental disorders of brain function that have such a broad range of behavioral consequences and severity that they are referred to, collectively, as pervasive developmental disorder (often called PDD) in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders."

"Any person, talented or handicapped, whose social skills have been severely deficient since very early childhood, who started to talk late or whose communicative use of language is inadequate, and who perseverates and lacks cognitive and behavioral flexibility meets the diagnostic criteria for an autistic-spectrum disorder... a third have had at least two unprovoked epileptic seizures by the time they reach late adolescence. Most persons with autistic disorder are not able to live independently as adults."

"The results of neuropsychological testing typically reveal an uneven cognitive profile, with nonverbal skills generally superior to verbal skills (*except* in Asperger's syndrome, in which the reverse pattern may exist). Poor insight into what others are thinking persists throughout life. Creativity is usually limited. A small minority of persons with autism have surprisingly good musical, mathematical, or visual–spatial abilities, despite profound deficits in other domains. In cases in which these abilities are astounding, patients with autism may be called savants (formerly idiot savants)."

"The main symptoms of autism are deficits in sociability, reciprocal verbal and nonverbal communication, and the range of the child's interests and activities. Contrary to popular view, children with autism may be affectionate, but on their terms and without the expected joy and reciprocity. Parents of such toddlers may describe them as independent rather than aloof and may be proud of their supposed self-sufficiency. The inordinate shyness, fearfulness, anxiety, or lability of mood of the child with autism may be replaced by detachment or depression in adolescence. Unprovoked aggressiveness, if not dealt with early, may become a major problem and lead to a need for heavy medication or institutionalization."

"In young children, common findings include... hypotonia, clumsiness, apraxia, and toe walking. Motor stereotypies are often striking and, besides hand flapping, may include pacing, spinning, running in circles, twirling a string, tearing paper, drumming, and flipping light switches, as well as oral stereotypies like humming or incessant questioning. Self-injurious behavior such as biting, head banging, and gouging may be an extremely severe form of stereotypy... In relatively well-functioning adults, childhood stereotypies often persist in an unobtrusive miniaturized form, such as finger rubbing, that may pass unnoticed."

"Children with autism may react paradoxically to particular sensory stimuli, being sometimes hypersensitive and sometimes oblivious to certain sounds, tactile stimuli, or pain. They may sniff their food and have an intense dislike of certain tastes or textures...Such children may cover their ears and stare with fascination at some visual displays and have an outstanding rote visual or auditory memory."

"Adults with autism may pass as being merely odd or reclusive, or they may be given a diagnosis of obsessive–compulsive disorder, schizoid personality, simple schizophrenia, affective disorder, mental retardation, or brain damage."

"A compromised ability to decode the rapid acoustic stimuli that characterize speech results in the most devastating language disorder in autism: verbal auditory agnosia or word deafness...Other children with autism who speak late may progress rapidly from silence or jargon to fluent, clear, well-formed sentences, but their speech may be literal, repetitive, and noncommunicative and is often marked by striking echolalia or "overlearned scripts." Some of these children speak nonstop to no one in particular in a high-pitched, singsong, or poorly modulated voice and perseverate on favorite topics."

"They often have temper tantrums if someone tries to make them switch activities or if a ritual behavior is interrupted. An inability to concentrate, together with intrusive stereotypies such as hand flapping, may prevent children from engaging in meaningful activity or social interaction. A decreased need for sleep and frequent awakenings during the night are particularly troublesome for parents and care givers."

" A decreased need for sleep and frequent awakenings during the night are particularly troublesome for parents and care givers."

"Various morphometric studies have found hypoplasia of parts of the cerebellar vermis, thinness of the brain stem and the posterior corpus callosum, and mild widening of the parietal sulci and ventricles in some, but by no means all, brains."

"The most important intervention in autism is early and intensive remedial education that addresses both behavioral and communication disorders. The effective approaches use a highly structured environment with intensive individual instruction and a high teacher-to-student ratio"

"Pharmacologic agents cannot cure autism because, in most cases, the brain has undergone atypical cellular development... The goal is to alleviate troublesome symptoms that interfere with the most effective intervention — intensive, targeted education. The results of a controlled study of the effectiveness of risperidone... are therefore welcome and encouraging... The search for safe and effective psychotropic medications has been frustrating so far. May this study be followed by larger, longer, and equally rigorous trials of interventions in children with autism. Such studies are sorely needed."

Amen!

Helen Harrison said...

Well, I was just going to go into the kitchen to make lunch, but discovered DH had already started a meal for Ed. The minute I went into the kitchen and DH and I started talking to each other, Ed began to grimace in extreme anger, hold his head, and then reach for his milk glass as is to spill it and/or throw it.

This is a typical reaction for him to the conversations of others, and it is why we can rarely eat together as a family (when we do, Ed has to wear earphones and listen to his walkman.)

He often gets *very* upset by spontaneous conversations of others since these are sounds he can't control. It is especially bothersome to him if the sounds involve laughter or high pitches (as in children's voices).

I dread to think what will happen when my brother and his two neurotypical children, ages 2 1/2 years and 4 months, come to visit this summer!

On the other hand, Ed can have his XM radio turned up to full volume on one side of his room, with the television going on the other side (also full volume) while he is simultaneously playing a tape(again at full volume) and playing an entirely different song on his key board!

It is so weird!

terri w/2 said...

The night we brought J home from the NICU, we put her in a bassinette in our bedroom, and she cried and cried despite being fed, changed, rocked, etc. I finally figured out what was going on - it was TOO quiet. She was used to the chaos of the NICU. So. .I opened the closet door, turned on the light and placed a radio underneath her bassinette - she fell instantly asleep.

Someone gave us one of those baby carriers that cuddles them in close to your chest - she HATED it. All 5 pounds of her would lurch backward and scream until we took her out of it.

She was always very sensitive to sudden unexpected noises - still to this day (age 21) hates fireworks, which is pretty tough for her since we now live 1/2 mile from where they are launched on the 4th of July. She hibernates in her room with her music full blast until it's over.

She spoke early - VERY early and was able to converse quite well by the time she was 18 months. People were blown away when at 2 years old, she could sing every Christmas song at the top of her little lungs in church. .to the point that people around us became quiet to listen to her. .

And, like Helen's Ed, she was dx with autism (Asperger's) as well as NLD. She went from being what we thought was incredibly gifted to - as she aged - incredibly disabled. I doubt if she will ever live independently, although part of me is still a little hopeful. She battles depression and gets very easily overwhelmed - she recently quit college because of the pressure, and is now languishing at home.

Interestingly, she went through the NICU with few complications for a 25ish weeker - came home without a monitor, no meds and feeding well.

GSB's mum said...

Hi to you all
I've been reading many of your posts and can relate to many of them.

Have you read "The mislabled child"?
http://www.mislabeledchild.com/
or alternatively
http://mislabeledchild.com/html/Library/index.html

Also these wonderful doctors (one a neurologist)have a blog
http://eideneurolearningblog.blogspot.com/
it is searchable.

Please also check out the other categories on the mislabled child library blog.

My child was a full term GSB (group strep B)/sepsis etc...who has a few (actually quite a few) learning issues. The book in particular has really brought it all together for me...good luck, hang in there!

Hope this helps someone, has made a huge difference to us!

Now I will read this post! Oops!

Helen Harrison said...

I have talked to several adults who had hydrocephalus from birth who tell me that they have unusual hearing -- that they can hear sounds that the rest of us can't, such as dog whistles.

I wonder if enlarged ventricles (which are extremely common among preemies) have something to do with hypersensitive hearing?

Stacey with an 'e' said...

Helen (or anyone else who'd like to respond),

I'm curious. Is the research you've excerpted and otherwise read saying or implying that SID is a form of autism...one that probably falls in the PDD category.

Although neither of my preemie has SID in anywhere near as severe a form as Paige has it, they both exhibit a little bit of a few of those symptoms. I'm also starting to wonder if maybe my son has a mild anxiety disorder that is at least partially responsible for his stuttering problem. I've noticed lately that when his stuttering gets bad, his behavior is horrible too. There's clearly something going on in his head. I just wish he could articulate it!

As an aside, I can often hear dog whistles (especially those dog deterrants that some people put on their houses) and they're horrible for me to listen to. Now I'm wondering what my ventricles look like! : )

Stacey (the one with an 'e')

Lisa - Mum to Mitch & Harry said...

From the time Harry was born he appeared to be extremely sensitive to external stimuli. Even whilst we were in NICU the possibility of SID was raised. When he came home I noticed he would happily sleep through noise and slept (and still does) with the radio on, but that certain stimuli like a noisy, crowded, enclosed space would make him extremely agitated.

I raised the issue with the OT at our prem playgroup and she assessed Harry as having SID (using a self/ parental reporting tool). She explained that we all react to various stimuli in different ways - with some people at one end of the spectrum (requiring large amounts of stimuli to respond) and others at the opposite end (highly responsive to stimuli). She assessed Harry's main issues as being movement and sound and suggested methods of assisting him cope with his environment.

One interesting comment she made was that Harry's SID was a combination of his extremely early birth and inherited tendencies. After discussing it with my husband we realised my husband feels quite agitated around large crowds (and is often found in our bedroom at parties), whilst I have difficulty with sudden movement particularly if I am tired (making being a passenger in a car distressing).

We also noticed as he became older that he would bang his head if over-stimulated. As a family we developed various mechanisms to help Harry and to a lesser extent Mitch cope with their world. We have a structured routine (not overly rigid). The boys have a set sleep routine - and even ask to go to bed when they are tired. We have practiced quiet time activities - like reading and puzzles. And have taught them soothing touch - where they are encourage to show affection by gently stroking your arm or face.

Now don't get me wrong they are still normal toddlers in the sense that they are champion tantrum throwers. But with the basic knowledge of SID and related issues we have been able to teach our boys how to self soothe.

I think of it this way. In my world there are things I avoid - like night clubs or car races - which make me feel agitated and/or ill due to the sight and sound. Whereas the boys are unable to control their environments to any great extent. So by teaching them the skills to relax we are hopefully teaching them how to best care for themselves...

Sorry to ramble this is just a fascinating topic...

Hugs,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old

Helen Harrison said...

To Stacey who asked:

"Is the research you've excerpted and otherwise read saying or implying that SID is a form of autism...one that probably falls in the PDD category."
****

SID is almost always a part of autism, but, as Dr. Rapin writes: "any person, talented or handicapped, whose social skills have been severely deficient since very early childhood, who started to talk late or whose communicative use of language is inadequate, and who perseverates and lacks cognitive and behavioral flexibility meets the diagnostic criteria for an autistic-spectrum disorder."

SID seems to be a sort of generic symptom of brain injury or abnormality. I know of people who've developed forms of SID after suffering strokes or head injuries, for example.

I have personally experienced mild forms of SID during migraine headaches, or after a sleepless night. For example, when seriously sleep deprived, I sometimes have an exaggerated startle response to noise.

Of the people I know well who've been diagnosed with autism, all have had, in addition to some form of SID, behavioral rigidity, social "weirdness," and strange (though not necessarily delayed) speech.

Otherwise, these individuals have been *very* different from each other -- IQs ranging from "not measurable" to 140, social skills ranging from "strange and isolated" (but able to go to college, sort of) to almost catatonic. Some are highly verbal (but very stilted in their speech) others have no language at all.

Autism covers a very wide range of disabilities, and sometimes includes strange abilities as well. But social, verbal and behavioral abnormalities seem to the common denominators in autism.

GBS's mum said...

Hi again
Helen sorry to have a different opinion, however...SPD (sensory processing disorder)
"the majority of children with SPD are not autistic....do not experience breakdowns in....social affiliation and emotional empathy"
pg 292 The Mislabeled Child.

Have a look through this...
"Preemie to school"
http://www.mislabeledchild.com/html/Library/PreemieSchool/index.html

in particular...
Auditory Processing
Emotional Regulation
Sensory Processing...

I've found a genuine approach to help these children, with all the variabilities that they have.

I've searched preemie websites because there is so little info on GBS etc and how to help the children.
Good luck
mum of GBS/sepsis etc..now multiple "learning" issues

The Preemie Experiment said...

Chris wrote: "He puts dangerously large pieces of food into his mouth."

Paige still spits out her food because she has shoved too much in her mouth. She used to make this G*d awful sound and then hurl the food on to her plate. We have now taught her to spit it out in a napkin, which makes for a much more pleasant eating experience. lol


Helen wrote: "This is a typical reaction for him to the conversations of others, and it is why we can rarely eat together as a family (when we do, Ed has to wear earphones and listen to his walkman.)"

Paige's CD player (with headphones) goes almost everywhere with us.

Terri w/2 wrote: "I finally figured out what was going on - it was TOO quiet. She was used to the chaos of the NICU. "

I grew up sleeping with the tv on in my room. When Paige came home I stopped since she slept in our room. We quickly figured out that it was too quiet also and started sleeping with the TV on. It helped a lot!!

Stacey wrote: "Although neither of my preemie has SID in anywhere near as severe a form as Paige has it, they both exhibit a little bit of a few of those symptoms. "

I have met many preemies with SID but still none as severe as Paige. We had seen a few OT's and they all commented on the severity of her sensory issues. Her worst issue is sound. Her NICU was incredibly noisy, even had the helicopter landing over the NICU!!

GBS's mum said...

Third time lucky??...

Helen sorry lost this part "most autistic children also show signs of SPD."

also from pg 292

GBS's mum

PS great topic, and yes we weren't told about it either!

Helen Harrison said...

gbs mum said:

"Helen sorry to have a different opinion, however...SPD (sensory processing disorder)
"the majority of children with SPD are not autistic....do not experience breakdowns in....social affiliation and emotional empathy"
***

If your child does not have the symptoms described by Dr. Rapin, then it is probably not autism, though the dx may change depending on the MD doing the dxing.

I'm not sure the label matters so much as the practical consequences, and for many of us the practical consequences involve the inability to live independently as adults.

Many of our preemies have *all* the problems described by Dr. Rapin. But just as they often are not properly dxed with CP when they obviously have it(or have motor problems that seriously interfere with their ability to walk and carry out everyday tasks), they are often not given the obvious autism diagnosis even when they are not normal socially, verbally, or behaviorally.

This is changing, however, as anyone on the "preemie-child list," where we have a constant stream of autism diagnoses, can verify.

Helen Harrison said...

MRI studies on preemies provide interesting insignts into our children with autism or autism symptoms.

A recent study of adolescents born at very low birth weight (<1500 grams) found disturbed white matter connectivity throughout the brains of these former preemies. The researchers particularly noted disturbed white matter in the external capsule and superior fasciculus, white matter tracts connecting brain regions implicated in social cognition. This is identical to findings in (non-preemie) adolescents with autism.

The preemies studied here also had high autism symptom scores on questionnaires and interviews, though apparently none had been officially diagnosed. It may be, the researchers hypothesize, that preemies have a disturbance in brain growth of the same kind that leads to autism in non-preemies.

The initiating cause of autism may be the physical insults to the brain from prematurity and NICU treatment, or from the prenatal causes of the prematurity itself (for example, infection or inflammation) or from NICU treatments such as being on a ventilator.

Genetic factors (and apparently there are well over a hundred different genes implicated) may help modulate or intensify the reaction to these stresses, as they also do in such complications of prematurity as ROP or BPD.

The MRI study is:

Skranes et al. "Clinical findings and white matter abnormalities seen of diffusion tensor imaging in adolescents with very low birth weight" _Brain_2007;130:654-666.

GBS's mum said...

Hi
Helen my intention was to educate. That is all.

I am only trying to offer something new to the debate, based on a differing experience.
I was unaware that preemies have a particular SPD outcome, it is a long list I'm yet to go through it, though some things are familiar to my experience.

Just thought that you may be interested in a viewpoint from a neurologist, who specialises in learning differences.

Particularly as the post refers to "physicians" taking notice, some already are and that was why I shared.

The NICU/PICU experience is one that connects me to others, and hopefully them to me. There are no blogs related to the treatment my child endured.

Take care

GBS's mum

Helen Harrison said...

To GBS's mom:

I didn't think we were debating here. The neurologists I'm quoting are saying nothing that contradicts what the neurologist you quote is saying.

SPD (SID) is part of, but not the entirety of, autism syndrome. It is a sign of brain damage/abnormality but does not, in and of itself, constitute an autism diagnosis.

However, when it occurs with social deficits, language acquisition abnormalities, and behavioral rigidity and inflexibility -- as it so often does in preemies -- that is sufficient for an autism diagnosis.

GBS's mum said...

Hi
I have connected to your stories, because although a difference experience, (ie not preemie) so much is similar. For my situation the Eides various blogs and book have been enormously helpful as I have recognised all the "neuro" difficulties we've encountered.

I can relate to almost every chapter in their book... this is why I choose to post, to maybe help someone else understand their child a little better, and see the way that all these conditions can be interrelated. They cover memory, language, CAPD, Visual Processing, Attention, Austism/autism like, SPD, Dyslexia, Dysgraphia, Maths Problems and Gifted LD.

They explain SPD in such a wonderful way, along with Auditory processing (CAPD) which also includes "hypersensitivity", for which they recommend the occasional use of musicians ear plugs. They also recommend other "interventions"....for other areas.

I've found good information is hard to come by, I have had some fruitless appointments with specialists.

If I ever post again I promise to prewrite (no online hurried stuff).

Thanks for your blog, it so helps.

GBS's mum

PS Helen, thanks, we have had everything on your list except the social deficits......it has all changed (improved) with age....
Debate/discussion is the same thing where I come from, sorry for confusion.

Lisa - Mum to Mitch & Harry said...

Dear Stacy & Helen,
Do I understand from your post that SID is a common manifestation of Autism? Does it then follow that diagnosis with SID is a precursor to an Autism Diagnosis?

The reason I ask is that Harry was diagnosed with SID prior to 12 months of age. However his Speech therapist who specialises in Autism and has two Autistic children commented that both of my boys show no overt signs of Autism in her professional opinion.

He engaged in head banging after he turned 18 months of age - but this has slowly lessened as his communication has improved. He is socially confident and initiates conversations with strangers and friends. He enjoys a wide range of activities - although he goes through stages - at the moment he LOVES puzzles. He initiates cuddles and kisses and is extremely affectionate with his twin brother (we are trying to teach the boys comforting touch). He is also acutely aware when his brother is distressed and will usually seek out a toy to comfort him. His latest thing is to get two snacks and give one to his brother - although his brother doesn't reciprocate.

The older he is becoming the more I recognise many of my behaviour traits in him.

He doesn't like eating foods which make his hands messy - neither do I

He becomes agitated and jumpy if over-tired - this has been a life long issue for me

He loves routine and likes to be warned in advance of what we are doing - well so do I!

Your learned opinion would be much appreciated...

Does his behaviour sounds Autistic or of concern?

Is it possible his SID diagnosis was premature?


Kind regards,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 3/4 years old

Lisa - Mum to Mitch & Harry said...

Dear Stacy/ PE,
Just to let you know I now list your blog on my blog site

http://mum2mh.blogspot.com/

Hugs,
Lisa

Helen Harrison said...

To Lisa:

If you read over what Dr. Rapin has written (best to get the full articles) you will have a better idea of how Harry does or does not fit in. It is awfully hard, except in the most severe cases, to diagnose very young children with autism. I believe the average age of diagnosis is something like 8.

When our son left NICU follow-up (around age 3) we were told by the psychologist there that he was intellectually and socially advanced. But at age 31 years he has PDD and MR diagnoses.

I do remember one behavioral ped who once asked us if Ed had a sense of humor. I thought this was a strange question, but Ed's inability to "get" humor later on or to engage in truly imaginative play did somehow encapsulate his autism issues for us. This doesn't mean that he wouldn't laugh (often inappropriately, however) or smile or that he couldn't imitate animal noises and car noises, etc. Or even initiate affectionate gestures.

But it is a quality of literal-mindedness and inflexibility as well as strange (though not necessarily delayed or deficient) speech, and *particularly* social inappropriateness or cluelessness that characterizes the people with autism that I know.

Helen Harrison said...

I took the list of Paige's symptoms and wrote a few notes about how they did or did not relate to Ed's behavior.

"sensitive to loud noises"

Ed is scared of any noise he is not totally in control of.

But paradoxically he loves PA systems in supermarkets, airports, etc. I always suspected it might have something to do with having heard these sounds from the hospital PA system. On the other hand, the sound of tape being torn (which I suspect he associates with medical procedures) makes him panic.

"hears well but does not listen well"

Ed hears well and listens to *everything.* He is especially obsessed with any telephone calls made incoming or outgoing since they may have to do with his medical scheduling, and this keeps him on constant anxious alert.

"shouts or screams for no apparent reason"

Ed has learned to be quiet at school, and isn't nearly as loud as he was as a young child. [However, my brother who is autistic, with a touch of Tourette's IMHO, used to squeal or scream about every 30 seconds for no apparent reason as a child -- now he just curses under his breath.]

"sometimes acts as if in her own little world"

Yes, Ed is definitely in his own world. He is the ruler of that world and has a major sense of entitlement. We try to "honor" it as much as possible.


"very noisy child"

Ed was noisy as an infant, but I'm not sure he was unusually noisy. He keeps his music very loud, but he has personally quieted down as an adult.

"likes to press ears against TV, speakers"

Yes!

"likes to listen to loud music when she is in control of the volume"

Yes!

"cups hands over ears with sudden noise"

Yes, and Ed's teacher tells me that several other children at his special day school do the same thing, although Ed is the only preemie. They really go berserk when a fire engine drives by the school.

"hates haircuts, hair washing, hair brushing, cutting nails"

We had to divert Ed with songs and music tapes for these procedures. We still have special songs we sing to calm him down while I cut his finger nails and toe nails and brush and floss his teeth.

One of his teachers at school cuts Ed's hair, but before he started at this school (age 6) we took him to DH's barber during off-hours so Ed wouldn't freak anyone out with his screaming. Same with the dentist and pediatrician. We even got the pediatrician to make housecalls because Ed would totally terrify the other children is his office.

"bangs hands on tables and walls to create noise"

Ed doesn't do this

"cannot sit still"

Sitting still is something else Ed learned to do at school, and with middle age he has become much more naturally sedentary.

At Ed's school the students walk four miles a day (2, 2-mile walks) and this smooths out a lot of the hyperactive behavior. Ed's teachers tell me that this is the most effective behavioral tool in their repertoire.

"high tolerance for pain"

Yes, but total terror of anything medical. For example, whenever a commercial comes on TV about "nine out of ten doctors..." Ed will anxiously insist "No doctor! No hospital!"

"always removes her clothes"

Ed seems more or less oblivious to his clothes.


"stuffs too much food in mouth"

Yes, and because Ed can't chew well, he often gags.

"dislikes being touched"

Yes, but will touch other people affectionately. He likes to rub the top of people's heads softly. It looks a bit like a Papal benediction. He calls it giving someone a "soft."

"delayed in toilet training"

Yes, still needs a certain amount of help, but this is mostly because of poor motor skills.

"heavy walker, stomps her feet"

Ed has a distinctive heavy limping gait, but I think it is more CP than behavioral.

"rejects being held unless it was her idea"

Yes!

"loves VERY strong smells"

Haven't noticed this with Ed.

"flaps hands around eyes"

Ed snaps his hands back sharply at the wrist when he gets angry, but doesn't flap his hands.

He engages in many other stereotyped behaviors, however. His favorite toy (other than those that make music) is a large marble roll that I got him as a toddler. A friend of ours (mother of a NT child) scoffed at the purchase saying, "Ed will just get tired of it in a few days." Thirty one years later, it still provides him with hours of activity each day.

"rolls head from side to side"

Ed doesn't do this.

"loves playing in water (abnormal attraction to it)"

Ed could stand all day as a child (even in the freezing Pacific) and watch/feel the waves come in or spend hours throwing rocks in a creek.

"enjoys things that spin or turn"

I guess the marble roll qualifies.

"loves to be spun around"

Ed loved to swing and go down slides as a child; he really enjoyed OT because of these activities.

"everything must be in order (shoes all in a row, etc)"

If a drawer is not completely closed even by a fraction of an inch, Ed has to get up from whatever he is doing and close it. At first I used to joke that it was because he was a "Virgo."

He also has a talking clock, and a toy cardboard clock that he has to keep perfectly synchronized. He gets very upset if the power goes off and the clocks aren't promptly reset. He is a human chronometer and a human calendar. On the first of each month he whines and complains until every calendar in the house is changed to the proper month. He can tell you what day of the week any date falls upon.

He wants to know, whenever someone comes to visit, exactly when they are leaving.

"loves to open and close doors and drawers"

Ed just closes them.

"loves mirrors"

Ed, not so much, but his vision is not very good.

"can't sleep unless blanket is very tight"

No, but Ed has an old blanket that he cannot sleep without. It is in shreds, and is very hard to wash. I hope it lasts as long as Ed does, because life will be very difficult otherwise.

"smears food or non edible liquid items on arms and legs"

Ed is very fastidious, and really doesn't like being dirty.

"trouble going up and down stairs"

Ed, too, but I attribute it to CP.

"turns upside down many times during the day"

When Ed was little he used to stand on his head a good bit-- which I worried about because of his hydrocephalus. He is too middle aged and sedentary to do this now.

The Preemie Experiment said...

It seems to be that the most common sensory issue in prematurity is centered around sound. I hear this from many parents. Oral sensory issues comes in a very close second.

For Paige, the sudden noise and not knowing when it will end, causes her the most anguish.

We quickly realized that we could minimize her stress by simply announcing the noise before it starts (when possible). It's become very normal to hear statements like "vacuum", "garbage disposal", etc. being announced in our house. We say it and then wait for Paige to say "ok". (most of the time she runs to her room or cups her ears)

After doing the dishes one afternoon I called out "garbage disposal" and waited to hear Paige say "ok". Nothing. I did it again. Nothing. Finally I yelled it (completely unheard of in our house), sounding quite ticked off. Still nothing from Paige.(our dog sure looked stressed though) I turned around to go find her when it dawned on me that daddy took her to the store! lol

The Preemie Experiment said...

Lisa wrote: "Dear Stacy/ PE,
Just to let you know I now list your blog on my blog site"

Thanks for link Lisa. After what happened with the troll, I took down all of the links to the parent based blogs that also link to me. I was being overly cautious I guess. I just didn't want the troll to have access to the list.

I will be putting the list back up soon.

Thanks again, for the link and for commenting!

Stacy

The Preemie Experiment said...

Lisa wrote: "Do I understand from your post that SID is a common manifestation of Autism? Does it then follow that diagnosis with SID is a precursor to an Autism Diagnosis?"

Personally I think many of the symptoms cross into both diagnosis (SID and autism).

Paige was diagnosed with PDD-NOS when she was 3. It was eventually taken away because she has appropriate eye contact and engages in recipricol conversation. Just recently her psychologist mentioned that she does not believe Paige is autistic.

I often wonder how long it's going to take before SID is added to the spectrum though.

Helen Harrison said...

Ed will not get into a car unless he knows whether the car goes "buzz" or "ding" to remind passengers to fasten their seat belts. He is terribly frightened of "buzz" and of buzzing and grinding noises in general, like the one that he used to hear when we'd lower the motor on our motor boat. He loved the boat, but the noise of the engine lowering would drive him crazy. I wonder what it feels like to him or to Paige to hear these sounds?

I also wonder if the buzzing grinding noises are related to the saw used to cut off his cast after heel cord surgery? This *really* freaked him out!

Joanne Pace said...

Hi,
I've been reading this blog since its inception, having been a lurker on Preemie-Child for years. My preemie son is now almost 10, was 29 wk, 1 lb. 12 oz. Just wanted to comment on the SPD/Autism connection...We were lucky enough to see a wonderful OT specializing in SPD from the time Austin was 3 1/2 until 7. When I asked early on about autism, she explained that all who have autism suffer some form of sensory issues, but not all with sensory issues have autism. That helped clarify this for me. Hope that helps others.
Joanne

Lisa - Mum to Mitch & Harry said...

Joanne,
Thanks for the clarification. In Harry's case his SID is not a daily issue and has seemed to improve as he has gotten older and is able to communicate more effectively. This kind of makes me wonder whether he had SID in the first place - I must admit to just being grateful that when compared to his peers apart from his size he doesn't particularly stand out.

Hugs,
Lisa
mum to Mitch & Harry

Helen Harrison said...

To Joanne who said:
"she explained that all who have autism suffer some form of sensory issues, but not all with sensory issues have autism. That helped clarify this for me."
***

Although it is true that not everyone who is hypersensitive to sensory stimuli is autistic, it is instructive to look at the list of symptoms of SID/SPD on the websites Stacy linked and compare them to the DSM 1V definition of autism disorders given by Dr. Rapin. The two lists are virtually identical.

As a long time member of preemie-child, you may remember when neonatologist Doug Derleth commented on the SID-autism relationship.

Dr. Doug, as you may recall, is the father of a FT autistic daughter. He went to the SID/SPD websites and said SID sure sounded like autism to him.

At any rate, autism isn't something like chickenpox where a single definite cause exists and and a definite diagnosis is always going to be made. People with autism can be very different from each other, despite certain common traits, and some of these traits overlap with other disorders.

My autisic brother has been given various diagnoses along the way depending on the views and training of the MD, but autism (Asperger's) fits him the best. My brother makes eye contact -- in fact rather relentless eye contact, sometimes -- and he can carry on a somewhat normal social exchange at least for a while.

As for my son, he was referred to as "developmentally delayed" secondary to prematurity until it morphed into PDD-NOS. No one ever told us about it; we just started seeing it written on the insurance forms.

If a diagnosis of autism isn't helpful to a family in terms of getting better services, there is probably no point in pursuing a diagnosis or worrying about whether a particular behavior is SID or autism.

But early identification and treatment with the only scientifically proven method (Applied Behavioral Analysis) can be important in some cases. It was to us. OT was lots of fun for ED, but an educational technique closely related to ABA was what really calmed him down, helped him gain self-control and achieve to his potential.

The Preemie Experiment said...

Joanne wrote: "When I asked early on about autism, she explained that all who have autism suffer some form of sensory issues, but not all with sensory issues have autism. That helped clarify this for me. Hope that helps others."

Thanks for reading Joanne. I do remember you from preemie child. I haven't been posting on there much lately though. My little guy sure keeps me busy. I can't believe how much more tired I am at 38 than I was at 30 when I had Paige.

Paige had a great SID (or SPD-I'm still getting used to using that one) OT when she was young. Her and I had a long talk about SID and autism. She said basically the same thing that your OT said, but added that she thought it would be added to the spectrum eventually, especially for those kiddos who were massively affected (like Paige). Here is it 5 years later and it still isn't part of the spectrum.

Helen Harrison said...

To Stacy who said:

"Paige had a great SID (or SPD-I'm still getting used to using that one) OT when she was young. Her and I had a long talk about SID and autism. She said basically the same thing that your OT said, but added that she thought it would be added to the spectrum eventually, especially for those kiddos who were massively affected (like Paige). Here is it 5 years later and it still isn't part of the spectrum."
***

Dr. Rapin is pretty clear on SID in her NEJM articles:
"Children with autism may react paradoxically to particular sensory stimuli, being sometimes hypersensitive and sometimes oblivious to certain sounds, tactile stimuli, or pain. They may sniff their food and have an intense dislike of certain tastes or textures...Such children may cover their ears and stare with fascination at some visual displays and have an outstanding rote visual or auditory memory."

These symptoms are well known within psychiatry.

Nancy Brown said...

I laughed. We have some of the same things that you are talking about .Of course.. people say the grow out of it. We are in a new state. I plan to search for people who will help him. He hates loud noises so a lot of kids in a room is to much. He NEVER sits still. He jumps all the time. Even when we are holding him. He loved his jumperroo... NOW I KNOW WHY!!!! I knoew he had head sensory issues. I don't think he is severe but I am going to look harder for an OT

Anonymous said...

Stacy,
SID is what I suspect my 5 year old has. She is a former 34 weeker, 1775 grams, but was IUGR for quite a while when I was pregnant.

Some of my other preemie parent friends actually suggested SID to me, and I've done a lot of reading and checked it out. I firmly believe this in my DD's issue. The problem I have is my family members who feel that I'm making this up. My husband, who tends to lean toward living in denial, thinks I'm reading too much into my daughter's behavior. He thinks she is just misbehaving. She is definitely sensory seeking...especially orally, but in other ways has some defensive components too. She can't sit still, has her fingers in her mouth throughout the entire day (not finger sucking), and is on "ramming speed" always. When she wants to give me a hug, I braced myself for the weight of her to almost bowl me over. It is cute in some ways, but as she gets older, this may get interesting.

How did you get your family to believe you? I feel like I'm going at this alone, and some advice might be nice.

Obviously, I haven't shared the whole story here. My plan is to discuss my concerns with our pedi, and then get an OT consultation.

Jen

Helen Harrison said...

To Jen who asked how to get your family to believe you:

Give them some med journal articles, for example:

Thompson DK et al. "Perinatal risk factors altering regional brain structure in the preterm infant _Brain_ (my copy is from Brain Advance Access published Sept. 28, 2006).

Here is an excerpt:

"[Our study identified] a new finding of a cerebral region of major apparent vulnerability which has not been reported previously to be altered in the preterm infant...that of the orbitofrontal region.

We documented an approximate reduction in the volume of this region by one-third...This region is known to be sensitive to stress and mediates emotional responses. Patients with lesions within this region may display irritability, social inappropriateness, poor judgement, lack of persistence, poor frustration tolerance and inflexibility, behaviors which are commonly displayed by infants born prematurely.

The orbitofrontal region also receives information from the object-processing visual stream, taste, olfactory and somatosensory inputs, as well as from the amygdyla, and thus impairment in cerebral development in this region may contribute to the delayed sensory integration of preterm infants.

The factors mediating disturbance in development in this cerebral region were not readily apparent in our analysis, with no clear association with any conventional perinatal factors ...This suggests that there may be important mediators of cerebral development which are not currently recognized but which may include environmental stress and/or drug exposures. In further support of the regional cerebral development in the preterm infant, interventions aimed at reducing stress have been shown to improve frontal region cerebral [white matter] development." [see Heidi Als' study in 2004 _Pediatrics_113:846-57]

I also recommend the article by Skranes et al. in _Brain_2007 which also relates preemie "SID" behavior to MRI changes.

If anyone wants these articles but has trouble getting them, please contact me at Helen1144@aol.com

The Preemie Experiment said...

Jen wrote: "The problem I have is my family members who feel that I'm making this up. My husband, who tends to lean toward living in denial, thinks I'm reading too much into my daughter's behavior.... How did you get your family to believe you? I feel like I'm going at this alone,"

Hi Jen,

First and foremost... YOU are Mom. You know your daughter best.

As far as family thinking that you are making this up... unfortunately that is a common complaint of preemie parents. I think family sees only the aspect of "she lived and now she will be ok" when we as parents are left to ensure that our child has the best possible outcome. Hubby issues... well, that's another story. Men in general only deal with issues when they smack them in the face. (or at least that's the way my hubby is).

Helen gave some excellent resources if you want to prove to your family that there is a real connection to prematurity and sensory issues.

I'm going to be a little more direct in my response. Who gives a crap (sorry) what your family thinks. I know it can be hard to feel alone but know that you are doing the best for your little one. **An evaluation by a SID certified occupational therapist is a non invasive appointment. You will not be harming her if you are wrong. If anything, she will have a blast. OT is usually tons of fun.

Over the years, family members have doubted our concerns (one of them even accusing hubby and I of Munchhausen's). At first it really got to me. I even started doubting myself.

One day Paige passed out on a swing. After a minute she was back running around the playground. I knew in my heart something was not right but after years of hearing the doubts from family members and hearing the miracle stories in the media, I believed that I was worried for nothing. I took her to her regular OT appointment the next day. The OT came out to tell me that Paige did not seem right. I told her what had happened and how I thought that maybe she had a seizure but was sure I was worrying for nothing. She let me have it for not trusting my instincts. Off to the pediatrician who also told me that there was no way Paige had a seizure because she was acting normal. I insisted on an EEG. The next day I got a call from her pediatrician. Paige had seizure activity the entire EEG. I made a promise to myself. No more questioning my gut feeling. If I have a concern, straight to the doc I go. If family doesn't like it, tough sh*t.

Please know that you can always come here to worry out loud. And, please know that your concerns are normal.

Stacy

Anonymous said...

Well, I know I'm the mom, but my DD interacts with her family. I refuse to allow them to persecute her based on what they think is nonexistent. I will advocate for DD, and will inform them of what her former preemie complications are. Thanks for your opinion though. I appreciate it.
Jen

GBS's mum said...

Hi Stacy and Joanne
I so agree with what is written regarding helping "family", I sent both sides websites (not too medical) to read up on information to help them understand.

I think it worked, though will never know whether or not they looked at the website!!

I know that some members of the family were concerned about "upsetting me" after all we'd been through!

And yes, absolutely listen to your intuition!

GBS's mum

stefafra said...

I was born at 30 weeks, may be 31 (mom does not remember, she said 7 months and a half). I was rather big (2,5 kg) and had no problems breathing and just some initial problem in feeding, so that I had a tube for feeding for a while. I spent some time in a sort of isolette or something to keep me warm.
Apparently all was nice and well, I was a happy well growing toddler, fat and round, and learned to talk very soon.

Walking was a different story, I started very late and was very wobbly. I was afraid of stairs and slopes, I "could be put on a slope and be still there 1 hour later", as my father put it. Crossing bridges, if there was a lot of water rushing underneath, was very very scary, I often cried if I had to walk on one.
Sport activities were a disaster,I disliked being upside down and could never roll on the ground or on the mat, or do a headstand. My equilibrium is not the best in the world, to put it simply, and i learned to go by bicicle only at 10, on my own. It took me a summer of constant attempts.
I do still have problems walking downhill, especially on mountain paths, even very easy ones that are happily used by pensioners and children. Wind and rushing water noises make it almost impossible, unless I can hold onto something like a hand rail or a rope. I do occasionally get stuck, I panick and have to sit on the ground, or grab somebody else's hand and try to look only at where I put my feet. Panoramic points are not for me, unless there is a fence or something to lean on.
I have problems distinguishing left and right and have a tendency to trip and fall easily, or to bump into things or drop them.
I was very bad in writing, my handwriting was and still is horrid, I used to swap left and right all the time, and now more or less settled into a right-handed-writing left handed.....I still sometimes invert numbers (17 instead of 71 and so on).
On the other hand I learned to read very soon and without any problem, I was one of the best of my class and knew many more words than the rest of the class.
I was fastidous about having my hands clean, disliked to eat with my hands and playing with messy things like mud or finger paint...

When I read the list on the website indicated in the post I started to believe that there was a reason to my clumsiness, tho my "being like a bag of potatoes" and some other strange things, the list could be a long one, and that it might be related to my preemie past, even a big and healthy preemie.

PS: sorry for the funny English, it is not my first language....

Deborah said...

Helen Harrison said,

I wonder what it is like for Ed and Paige, I wonder what they hear.

I have SID and it is H*LL. My husband just ran the Vacuum and it felt like my whole body was being attacked and death is imminent. It is painful and scary and even though I can articulate how it feels I still can't make it stop. Ear covering. Leaving the room. Screaming at him (hubby) to make whatever noise it is stop are all a daily occurance. I love your site Preemie Mom. I wish my own Mother understood all I go through but she doesn't. Just today she told me that I (I can't believe this!!)hurt her feelings by asking her to not ring the phone more then once when she called and that I am smart BLAH BLAH BLAH and can over come it if I choose. NO MOTHER I choose to live like this. YEAH. RIGHT.

Ok. I am done. Thanks for being here and caring so much for your kids. Deb

Anonymous said...

This disorder is a monster and drs. have allways said the same thing that my daughter is a fighter.The problem is these kids need help untill they are adults and are not getting it.Being told they are caught up at 3 or 5 is completely dishonest and devestating to the child and family.We have been living blindly scince 3 yrs old and now 10 yrs later trying to figure everything out and how to maximize the quality of life.

amanda tadlock said...

OMG, my daughter was born in 2004 at 25 weeks gestation. Out of all of the things that could be wrong with her, she has none so far that we know of. I always thought Maci was overagressive due to her prematurity and such but today while reading this list of things your daughter did and still does, I almost cried because it is almost exactly like Maci. I am wondering if you can give me any insight to this or advice. I am working with my local 0-3 program but we are in such a rural area there aren't any specialists here. My director said to maybe contact you to see if you have any advice on this disorder and such. Thanks for turning on the light for me.

The Preemie Experiment said...

You are so welcome Amanda.

I sent you a private email. Please let me know if there is anything else that I can do.

tbonegrl said...

I'm coming back to this post, many years leater, and it is a lot of help to me.

Longtime reader, Stacy...the boys were just diagnosed "SPD" yesterday...lots of reading on my part to do!