[angelkisses0102]

I am going to post an update...to this post from May of 2008...

Let's see here is what I gave the school district one year ago (2007 now) to describe SOME of DS's sensory 'fun.'

Quote:

• Vision ~ Alexander has Infantile/Congenital Nystagmus. He ‘appears’ to have decent vision but has issues with night vision. He does not appear to see as well at night. He is also sensitive to bright (outdoor) lights.
• Sensory ~ Although he has not been diagnosed, we strongly believe he has Sensory Integration Dysfunction/Sensory Processing Disorder. We have come up with our own sensory diet at home to try to help him while we had been waiting to have him evaluated. Some examples of his struggles include:

Tactile Defensiveness- as an infant diaper changes were a nightmare, he hates circle time at school/needs his personal space much larger than typical, hates having his hair brushed, socks are an issue, shoes must be loose, his pajamas must be loose, his food choices are very limited and must be served at the perfect temperature or he will refuse to eat it…even once it has been corrected. And forget about tags…he HATES tags, on anything.
Hyposensitivity to touch – Mouths objects…still has a pacifier which he gnaws on, chews on his shirt constantly, and loves to touch soft things.
Hyposensitivity to Movement – in constant motion at times, loves to run, loves to be thrown in the air, he is a jumper and a climber with no fears, loves to swing, and loves to ride his tricycle into things.
Proprioceptive Sensory Seeking – seeks out jumping, bumping, and crashing activities, kicks his feet when sitting, loves to bang his toys, loves roughhousing, jumps on his mini trampoline and just about anything else, frequently hits, bumps, pushes, hugs too tightly other children, chews as noted above.

Auditory Defensiveness – Distressed/distracted by day to day sounds, hates public toilets, hates thunderstorms, tells people they are too loud, cries, runs away and covers his ears with loud unexpected sounds, and hates loud entertainment like the shows at Disney.

Oral Defensiveness – Picky, picky eater, he resists any new foods; he will stop eating a food if the packaging changes, hates brushing his teeth-gags on the toothpaste.
Hyposensitivity to Oral Input- He still drools constantly, as mentioned above he has a pacifier still and gnaws his shirt.
Hypersensitivity to Visual Input – Sensitive to bright lights (may be Nystagmus related.)
Social, Emotional, Play and Self-Regulation Dysfunction – prefers to play alone or in a small group, hates ANY change in routine, gets easily frustrated and still tantrums, loves repetitive play, he was an extremely fussy baby (may have been attachment related as well,) has a hard time self soothing, did not sleep through the night until age 30 months (he did have obstructive sleep apnea as well) and was up several (or more) times per night.

DS was adopted at 8 months old from Russia and we started seeing some issues immediately. However he was attachment challenged and we had to address that first. He has recently been formally diagnosed with SPD/SID even though we have been addressing his issues for over one year.

He is labeled as significantly developmentally delayed (almost globally) and has a severe speech impairment (not delay...huge difference). He also has feeding issues which we are finally addressing (he eats just enough variety to survive with a little help from pedisure.) He is in a SN pre-k since last fall and has BLOSSOMED. (This is language based and do tons of sensory activities.) He will continue in a SN K class next year with ST and OT there. We have finally gotten him into private OT with a sensory OT...just recently and we are already seeing great improvement. He will be evaluated by a private ST for his swallowing issues...both of these private OT's are paid for by insurance...FINALLY!

We have used or are using all of the following with DS...this is a partial list:
mini-tramp
jumping barefoot on tile floors
spinning him, swinging him, throwing him in the air
ball pits
riding his tricycle into things
massage and massage therapy
cranio-sacral therapy
adding DHA/Omega 3 to his diet
removing cow's milk from his diet
GFCF diet (couldn't work this and he didn't need it)
food allergy and intolence testing
brushing
rolling on an exercise ball
crab walking
swimming
water play
play doh and shaving cream
tents
swaddling
rough roughhousing

DS is now almost 5 and our main issue is impulsivity...but he recognizes this which is huge. He has improved so, so much in the past year...many of the issues mentioned above have either been greatly reduced or are no longer an issue. We did just start having issues with his sense of smell and him gagging until he throws up-due to smells. Oh joy!

Our biggest treatment 'successes' are bolded above...besides him now seeing a sensory OT!

Hang in, in gets better...trust me!

ETA~ I forgot to add that his sn pre-K is 6 hours per day, 5 days per week with 2 sessions of ST there. We see the OT twice per week for 30-60 minutes and have specific activities we do daily...so he is working very, very hard at overcoming this. I am so PROUD of him![/quote]
__________________________________________________ _____end of 2008 post_______________________
How far we have come in the past two years!!!

DS is no longer labeled as developmentally delayed...he is graduating from feeding therapy in December and is no longer in OT. He completed a year of SN Kindy as a very young 5 year old and is repeating Kindy (still in a self contained classroom/SN) this year as a much more confident six year old.

We discovered in March of this year many of his sensory issues were aggrevated by the fact that he had been suffering with the pain of Juvenile Rheumatoid Arthritis since just before his 4th b-day. This also played a huge role in his developmental delays since his JRA impacts his toes, knee, hips, shoulders and elbows. As we have successfully treated the JRA....many of the sensory issues have calmed down. Phe has learned how to reregulate himself.

He has matured so much in the past year...and his social issues have become very very minor. You all have no idea (actually you probably do) how thrilled I was this past week when I went to pick him up at after care. As I pulled up, the kids were playing and I noticed three little boys laughing, chasing each other and having a grand old time. Then with tears in my eyes I realized my son was one of the boys (they uniforms so it's hard to tell from a distance who's who.) Everyday when we leave aftercare there are no less than five little guys he high fives on the way out.

Does he still have his struggles? Of course...but compared to two years ago...this is heaven. He sense of smell is and probably always will be on overdrive...but he no longer gags and vomits at certain smells. He will remain in the high functioning special needs classroom for a while...mainly for his speech and physical 'disability' aka JRA. Although he has graduated from the letter 'k' in speech and is now working on his 'L''s...the improvement is huge (which has helped him in the social aspect.)

We had him tested this summer and his IQ is 'normal'...the pyschologist actually felt this was not a true measure however because he was still in pain when he was tested. He also has some vision issues which were not taken into consideration at the time because we were still in the discovery phase of that.

So my very, very longwinded words of wisdom....hang in there. It does get better with time. I often think back to the worst of our days and can't imagine how we made it through. But here we are at age six and thriving. My second bit of advice is also to continue to dig, beyond the sensory issues...little did we know two years ago that DS's biggest issue was not SPD but the pain of JRA. So while in many cases it is SPD...it may not be.

Good luck to all.

[mommytoEli]

angel...thanks for posting that! it gives me hope. i do agree it does get better. if for nothing else, i feel for me it has gotten better bc i "know" my son better. when i see him starting to melt down, i can look around and often times figure out what is causing the melt down. i can turn down the movie, remove the crying baby, cover his ears, fix his shirt, take the lumps out of his pudding, scratch his head(he likes it ). lol. whatever. and it gets better.

[kimbo1]

Originally Posted by mommytoEli

TO kimbo1:

yeah, i'm going to guess that with what they did say, and what they are having you do, that your child has SID. it is apparently relatively new...so maybe they just didn't title it for you. i'm going to consider you a member....bc you are dealing with all the things we are dealing with! how's that brushing working out for ya???
eli likes it, but it is a pain in the butt sometimes for me

You know what? I never saw this, mommytoEli!

He is doing MUCH better (A year & a half later!!!) I feel really bad that I never answered you!

He cuddles up for snuggle time at night-it's short & sweet-but it happens-& he freely gives hugs & "besos!" YEAH!!!!

He talks ALL THE TIME & runs around like a crazy child. His latest game is to pretend he's a dog.

I still think we have issues with our older Guat tot, but it is hard for me to nail down what I think the main problems are, so it's hard to ask for help, KWIM?

[bhouston]

I think I missed this thread the first time around or have forgotten if I responded...having a child who is 6.5 yrs old...we have been dealing with this for a long time!

We also have some other stuff such as ODD...but it took forever to get this diagnosis...our insurance does not even cover it because they do not recognize it as an diagnosis?....

I knew something was wrong when we spend yrs in speech and had very little improvement and then she started reading and had some of the same issues...I found a wonderful OT....and she has worked with children...with sensory issues....and the thing that has helped my daughter the absolute most....has been Rythmic Movement Therapy....intergrating reflexes....we have been doing a program since August and truly I can not believe the improvement with my daughter...it is amazing....I was at ice skating today....with her and she was so happy we had started this program....her behavior has changed SO much...I was so concerned about the first grade cuz even though her school is a small charter school her teacher is very laid back and lets the class be very disorganized....this is not good for my daughter who can gets distracted over anything....

But....she is able to focus is doing amazingly well...I am in her classroom 2 days a week....and as other kids are running around...she is sitting at her seat focused and doing her school work....amazing for my little girl!

I go to lunch a couple days a week as well just to keep that connection and check on her....she said she loves it cuz it helps her refocus and balance herself!

Before RMT...every day was such a struggle...especially for her.....now she is able to cope so much better....I only wish I had known about this before....

It is so good to see a place for families to come and learn....even 6 yrs ago....there was really nothing....no one seemed to be having the issues I was having with Brooklyn....fortunately I was lead to the China attach board and so began our journey to healing...there is so much that can help our children!

We have been taking fish oil and acidopholus for yrs and I know that helps too...as well as we just do not do video games or alot of movies....it just overstimulates her too much...we try to keep her busy and that is really helpful...mini trampolines are wonderful for sensory issues...

Brooklyn came home at 9.5 months with awesome foster family....now 6...diagnosed with attachment disorder, rad, ODD, and sensory issues....but happy to report...attachment strong and healthy...RAD since RMT almost non existent....ODD very mild....sensory issues....almost healed! Even today she put on a long sleeve shirt all on her own!! HUGE for her...she hated the feel of long sleeves...they bugged her all the time...now she dresses herself in them! That is what the reflexes being intergrated has done for her....made her not sensitive to stuff like that...

This summer she even road her bike without training wheels! Huge because she was terrified of falling over as well as small water slides...but after doing RMT for a few weeks she wanted her training wheels off and took off riding...I was shocked...and wasnt afraid of the slides at the pool anymore either....when retested...the reflex that makes you feel off balance and like you are falling over...had intergrated and stayed intergrated....and she is ice skating and cheer leading and all the things she use to avoid that caused that dizzy off balance feeling doesnt haunt her anymore! I am so happy for her....

For those starting this journey there is SO much HOPE!! So much help and healing that can take place...and life will get so much easier and joyful!!! Beth in Idaho

[mommytoEli]

Originally Posted by kimbo1

You know what? I never saw this, mommytoEli!

He is doing MUCH better (A year & a half later!!!) I feel really bad that I never answered you!

He cuddles up for snuggle time at night-it's short & sweet-but it happens-& he freely gives hugs & "besos!" YEAH!!!!

He talks ALL THE TIME & runs around like a crazy child. His latest game is to pretend he's a dog.

I still think we have issues with our older Guat tot, but it is hard for me to nail down what I think the main problems are, so it's hard to ask for help, KWIM?

oh i am so glad that there are so many happy updates today. i am glad he is doing better.

[NJRach]

Here's an update on our SI tot. Last summer, at age 2 1/2, Manny had major sensory seeking issues. He would run off in public places, totally fearless and never looking for us. He also drooled constantly and chewed on all sorts of things. He screeched often, loved swinging and spinning, was in constant motion and broke or dismantled most of his toys.

At age 4 he's stopped running off, but he does get impulsive and if he sees something interesting, he's off like a shot.

We figured out that too much sugar and additives were major aggravators. It's almost like clockwork. Too much sugar and he gets aggressive, talks incessantly and acts impulsive without thinking (like on a camping trip he tried to stick his hand in the fire to pull something out).

He has a bizarre amount of stamina - he can walk for miles, and hiked for two hours up a mountain this past summer.

He still puts things in his mouth, and now he's discovered he can use his teeth for things, like pulling apart Legos. We still find him with things in his mouth - coins, small toys, gum, or bits of crayons.

On the flip side he's very outgoing and makes a lot of friends. If I can get him to the playground, which we try to every day, he'll find a gang of kids to play with and wear himself out.

So it's one day at a time. He's giving me a lot of gray hairs, that's for sure.

Rachael

[NJRach]

I forgot to mention one other odd behavior, and was wondering if anyone else with an SI child noticed this. Manny won't let anything go in his bedroom except for his bed, dresser and cabinet with books. If we leave any toys or shoes laying around he moves them into the hall before going to sleep. He also made us take the valance down and remove the pictures from the wall.

He said he needs it to be "quiet" at night. I'm thinking all the extra stuff gets him too wound up. Does anyone else's kid do this? It looks strange to see a 4 yr old's room looking like a monk's quarters.

Rachael

[mommytoEli]

Originally Posted by NJRach

He still puts things in his mouth, and now he's discovered he can use his teeth for things, like pulling apart Legos. We still find him with things in his mouth - coins, small toys, gum, or bits of crayons.

eli does, too. i was laughing so hard yesterday because of this little incident where i remembered my son is different.

the baby somehow got a hold of eli's favorite stuffed monkey friend.

eli: MOM! "a" has monkey!

me: eli, it is FINE....calm down.

eli: it is NOT ok, i have told you a million times not to give him that monkey!

me: no you didn't eli. it is fine. it will be alright.

eli: no it will not.....he might LICK him!!!

i CRACKED up bc a non-sensory kid would be worried he'd break the monkey, lose the monkey....NOT LICK the monkey. lol. i love him.

[SKL]

Interesting. I always thought my elder daughter was affected by this in a relatively mild way (still do think so), but now my younger daughter is making me wonder. She has always been headstrong but used to be pretty calm. Since starting preschool, she's reacting oddly to things. I wonder if she is overstimulated or if there's something irritating in her environment at school. Diet has also changed, as I serve organics or at least "all natural" stuff at home, but they use conventional stuff at school; so maybe that's part of it.

She'll be 3 in January (came home at 9 mos). She still likes to put stuff in her mouth that shouldn't be there, and sucks on her lower lip a lot. She's a great eater, but I have to remind her to be careful/neat, and lately she's been using her hands when she knows she shouldn't (e.g., to eat gooey foods). She doesn't "bounce off the walls" but she'll impulsively do foolish things like jerk her head back without checking to see if it's safe. She seems to like making a mess. She'll write some letters but "M" becomes a whole mountain range and "O" becomes a spiral. She has to touch and move everything. She loves to make loud noises for effect, yet she complains if I play the music or video "too loud." (She also gets unhinged if I raise my voice, despite completely ignoring me if I don't.) She can be clumsy but also has good hand-eye coordination for doing puzzles, etc. Her speech is inconsistent, sometimes being crystal clear, other times slurred. She sings all day on her own, but won't participate in group singing or the like. She likes rough-housing, swinging, spinning, asks to be tickled, touches affectionately, and enjoys activities like gymnastics that involve the whole body.

It's hard to tell what is "her age and personality" versus a "symptom," but reading the comments here encourages me to keep watching for patterns and ideas to address them.

[kimbo1]

Originally Posted by kimbo1

I still think we have issues with our older Guat tot, but it is hard for me to nail down what I think the main problems are, so it's hard to ask for help, KWIM?

Yeah-a big clue we *might* still have problems with her is that she does things like this:

Last summer, we were returning home on a road trip. We had stopped for lunch/bathrooms etc. DD is potty trained, so I took her into the stall with me. While I was going to the bathroom, she LICKED THE TOILET SEAT! YUCK!!!!! There mere memory of it makes me want to soap out my own mouth!!! (I did soap out hers-right then & there in the Wendy's bathoom!!!)

Think we might still have issues?

[NJRach]

MommytoEli- Yep, only a SID kid would be concerned with someone licking his toy. Our kids definitely think of things from a different perspective.

SKL- sounds like your daughter might have some SID issues.

Kim- I'd say licking the toilet seat is on an SID kid's list: oral fixation + impulsivity = licking Wendy's toilet seat. Bleech!!!

Rachael