Sensory Integration Disorder (SID) Community
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Avatar universal

Hello... Here's Our Story

Thanks to Sandman for introducing me to this forum.  I was searching around for any new, helpful ideas for our daughter, now 10.  We recently moved and she has had a major change to her academic environment, so with that comes stress, naturally.  So, her moodiness has increased.  She was never evaluated for SPD due to peds overlooking things I relayed early on and because the info I read often had to do with crossing the midline and other struggles she never had.  But after reading here today and from other sources I do wonder about SP issues for her AND her brother... as well as taking a fresh look at my family of origin's signs.

I thought I'd kind-of outline our experience here and see what you think.


More on Cece:
Remember infant arms moving quickly, didnt like arms swaddled from birth,
fluttering/much movement early in utero,
Hiccups in utero
Cried much, trouble sleeping from birth
Needed swing to go to sleep (fast front to back motion only)
Needed loud white noise to fall asleep (used ocean waves).
After outgrowing swing, would not nap in crib... Only in high chair or next to me with a favorite video on.
Would only go in crib asleep at night after nursing or bouncing/loud shusshing for some time.
Hated going in car seat until day she went in booster
Reacted poorly to vaccines (note: at 6 weeks screamed for days, fever)
Constipated for 3 weeks as infant
To this day, I have spent a great deal of time with her in bed reading, talking, drawing (followed her desire for that since 1 y/o) - this has become shorter recently due to use of Relax App and less time available (she must get up much earlier for school now and recognizes need for sleep)
Extreme tantrums - sometimes related to not wanting to go somewhere, hair washing, brushing and other times, couldn't understand why.  Wondered looking back if overtired and bored, but the upset was SO strong and persistent and I couldn't do anything to stop it.
Continued to have persistent reactions until about 2 yrs ago.  Still overreacts but can walk away sometimes and doesn't scream.  Only does this with us.  Noone else sees it.  An angel at school until in car to come home.  
Although very nice and incredibly wise otherwise, can be very harsh on brother and parents.  

Met milestones early or as expected. Able to do 2 handed rattle grasp by 2 months. Very early, amazing talker.  Walked on sched. Grows well.  Rode a bike well at 4.  Naturally talented in arts.  Early sense of morality/justice.
Very observant.  Felt in infancy and early childhood like she never missed hearing anything.  Very strong reader.  Writes fine.  Perhaps a bit inattentive at times but not significant idt.  Socially fine.

Things that likely helped her:
Besides those mentioned above -
Years of gymnastics and now dance.
Clean nutritious diet.
Plenty of exercise.
Playground time.
Following her up the steps endlessly in older infancy.
Letting her explore the house (with me).
Active grandparents and other family.
Montessori and homeschooling until this yr.
Allowing her to play while I read at night.
Music during work or art.
No tv near her in first few months of life.  Then minimal videos first 2 yrs.
My obsession with turning down lights at night/getting to sleep in good time and in relaxed manner.  (Partly driven by following her cues).
When at Montessori, staying to play outside for 1-2 hours year-round with friends.
Trying to find time for just us or she and her dad or extended family to talk, do things apart from extroverted/physical bro.
Help keeping organized.
Compatible friends.

What makes it worse:
Obvious sleep loss.
Stress and guilt.
Perhaps certain foods (no food journal to date).
No time by herself for too long.
Trying to reason when upset.
Going hungry and perhaps not enough protein vs carbs.
Not getting what she needs from other aforementioned things...
Negative friendships.

Etiology of disorder or symptoms:
Stage 4 sleep issue?  (She's had carb cravings, growth hormone stimulation.  Her brother had terrible sleep issues when younger).
Toxicants or heavy metals (although we were eating much organics prior to pg, supposedly we have much in our bodies nowadays.  I also had amalgams then)?
Genetics (more on that another time).
Cord wrapped x2 around neck at birth?
Unnecesary pitocin to induce birth?
Bad stomach virus or food poisoning early first trimester?
Hormonal?  (She had labial adhesions at 3 y/o which can be a sign of low estrogen.  Did nervous system problems stem from that or did nervous system issues overtax hormones?  Gut issues can also lead to hormonal problems as the stomach is the 2nd brain).

If SPDs are dynamic vs static, are there underlying physical issues (changes in hormones etc) or is it merely the changes in environment interacting with brain ab/SPD?  She was in a pretty consistent environment but I understand subtle daily changes may produce bigger than expected.
What else might be helpful?  Relax app helps.  I love it too.  :)  Am thinking of trying Sleep Genius in case she has a stage 3 to 4 sleep problem.  
Thinking of using Calm Child prophylactically or ashwagandha.  I feel it would help for her to feel more of a deep sense of physical relaxation and to have a number of times where she doesn't feel inclined to overreact to disappointments or brother.  Reset mind-body connection.  
Does she need supps like Vit B complex (can be very good for stress, sleep, and hormonal reg), Vit D, and iodine?
Is there a bloodtype connection for her?  (Need her type).

I find the heavy movement activities you all mention fascinating.  Enki homeschool program talks about this and how some students do much better doing it before circle time or work.

Sorry this was SO long but I figured I would get it all out now.  ;D  Any thoughts?  I imagine our experiences like some of yours, are due to a mix of circumstances, personality/temperament, intelligence, family dynamics, and whatever plagues her nervous system.

Her brother's story another time... *TY so much* for taking the time read.  I really appreciated your stories here.
3 Responses
973741 tn?1342346373
Hi there and welcome!  I was away and just returned so sorry for delay in answering your post.

Regarding your daughter----  truthfully, I'm not sure if it looks like sensory.  sensory can take many forms but there are some hallmark things that are missing from your history that would indicate sensory.  Examples are that most kids with sensory have some issues with fine motor.  My son walked early but this is common with sensory as walking is actually much easier than crawling in terms of motor coordination.  My son rolled over a bit behind schedule.  Nothing ever stood out to pediatricians but I remember worrying for about a month that he should be doing it.  In his toddler years, he had trouble with things like pinching tweezers to pick up pom poms from a dish, using scissors, writing.  that is all very common with sensory integration disorder.  It's confusing because while my son did have trouble with those things, he is a mixed bag and is actually quite coordinated athletically.  He has done occupational therapy which got his fine motor back on track.  But that your daughter never had any motor planning issues is a good sign in terms of not being sensory related.

Another hallmark sign missing is that she does fine in school.  Now, it could be that she holds herself together at school but falls apart in the more relaxing environment of being with family.  That does happen but in truth, It would be rare for her to not have issues outside of home.  In fact, most sensory kids are the opposite with major issues being away from an environment that they feel they have more control in such as home.  My son's issues in preschool were very different than at home.  At home, we saw 'some' things but it was much worse when he was somewhere that he felt overwhelmed, in less control, or was excited about it or anxious about it.  School is almost always a tough place for sensory kids as well as loud places like parties or malls, etc.  So, I'm also not sure that your description matches sensory with that bit of information.

Now, the issues of having over the top meltdowns when hair is brushed, face washed, etc. is absolutely classic sensory.  My son has tactile dysfunction and feels things to a great degree that the rest of us don't.  

My son was also a baby that we had to walk forever around the house to get him to sleep.  He was a happy, content baby over all but he needed this type of stimulation to help him sleep.  He still can have issues sleeping but not many compared to many sensory kids.  they like to 'nest' which means to build a little nest around their head an body of pillows, stuffed animals, and blankets.  Some kids like a weighted blanket as well as that deep pressure is very soothing to the nervous system.  My son has one of these and it's great.  

If a child is diagnosed with sensory such as my son, he always has this developmental delay.  Part of the treatment for it is teaching coping skills as well as learning ways to regulate the nervous system to keep the symptoms as minimal as possible.  My son blends in well and at 9, understands that he has to do things to make his 'engine' (as we call it) feel just right.  With a daily dose of sensory activities, he is well regulated and this helps him feel good, blend in, and keeps the symptoms of sensory very low or gone.  and when he has sensory symptoms, he knows what to do to cope with them.  

yes, changes in the environment, schedules, etc. affect sensory symptoms.  If my son is sick or tired, his sensory is much worse.  If he is in an environment that is unfamiliar and overwhelming, his sensory symptoms are worse.  In terms of hormones, etc. I would imagine that all things have some affect but this is outside the control of your child or you.  the interventions for sensory are related to learning to regulate the system and having go to plans when the symptoms become troubling.  Behavior modification is introduced for the times in which someone can't slow or speed up their nervous system due to issues with the sensory system.

They do sometimes look at diet as well with sensory kids but we found my son's diet to have no affect on him.  

That you've gotten her very active in things, that she does well, etc. is great!!  I'm happy to hear that.

No vitamins really help.  I do give my son a good multi vitamin though for overall health.  No medication helps.  And blood type is unrelated.  The way to treat sensory is through occupational therapy with a trained therapist in sensory issues of children.  this will include teaching the things a parent/child can do to help keep the nervous system 'just right' (heavy work is a term often used for this and is basically physical activities that cause the nervous system to be organized, well functioning.  Deep pressure is part of this as well.  My son is a competitive swimmer which combines the muscle work of heavy work and deep pressure both----  great for regulating the nervous system).  They also work on behavior modification during OT and they work on the things that challenge a child with sensory (hand writing, tactile issues like hair brushing or brushing teeth).  

What is she doing now that has you concerned about sensory?
Avatar universal
Thanks so much for responding!  Kind of you to share your experience with others.

It is late and so will need to keep this brief and respond more later.  It seems she has some of the sensory signs and yet perhaps there isn't a 'category' in which she falls yet.  We are still learning about emotional regulation in the brain and issues with crossing the midline, with regard to emotion.  Perhaps one day...

It is possible, too, she holds me to a higher standard because as an infant she was conditioned to know I would help her with whatever it was bothering her in the moment.  We seemed to communicate well with each other from the beginning.  Perhaps I need to work even harder on building coping skills to deal with upsets and self-soothing.  I still wonder too if certain herbs could help as her anger flares up so quickly when upset.  If that reaction time could be slowed and emotions softened it may save her a lot of time spent frustrated.  Adaptogenic herbs might be useful in not taking down her fabulous spirit but preventing crossing the line into rageville.  

I don't think, you are right, she has SID.  There may be overlap, as I have remembered a couple more fitting signs, but not all the same.  Or the root of what challenges her produces similar signs to what kids with SID have but are different in etiology.

I do think too that some are more aware and sensitive by nature and it is one of their gifts.  But it can also be overwhelming if nature or nurture isn't serving them well.  In her case it is nature but as parents we can always adjust and improve to help.

Thanks for listening and sharing your thoughts.  It is challenging to figure out these things.  I know with proper care, guidance and love these kids will do fine.  

So much for a short response.  ;)  G'nite.

Avatar universal
I will consider more heavy work for her too, thanks!  Her Enki homeschool materials have ideas and swimming is something she enjoys so if we can fit that in...  Maybe it will help with her nervous system.

Your son is fortunate to have such a devoted, caring, smart mom.  I am sure it has not been easy but your love for him and consideration of other families shines through.
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