Support thread for parents of children with SID

[Britishmum]

As others seemed to like the idea of a support thread - here we go.

edited to remove post

[littlest birds]

hi I think one or two of my children has substantial SID issues...

I don't have a whole lot to say right now but thanks for starting the thread

[chfriend]

Pumpkin (dd #1), 4, seems to be sensory seeking and tactile defensive. I say seems to be because we haven't had an OT evaluation. She also seems to be gifted and is tall and big so other people's expectations have been completely off for her for most of her life. This runs into her emotional sensitivity and perfectionism so she evaluates each new person in her life carefully (mean teachers just don't last with us).

We're planning to homeschool and grateful beyond words that she has 5 older cousins who saved their clothes to pass down to her. They are all washed and soft. Shoes are nicely broken in.

We've started doing something sensory right before bed because that seems to help her calm. I'm wondering if your kids have trouble falling asleep, and what helps them?

Hair brushing has been our hardest thing. (Cutting is out of the question, don't get me started.) We now brush it with her on my lap, sucking a bottle of cow's milk, holding my breast and watching PBS or Magic School Bus. Really only y'all will understand how that scene could possibly be AP or even decent parenting.

We had knots and gum in the hair from her unwillingness to let me touch it around the time her sister was born. Please share my victory when I tell you that last night was the last time I will have to spend 1-4 hours every night picking it apart with a rat tail comb while she's sleeping. (Don't know where I got the strength!)

Thanks for the support thread. I'm looking forward to "meeting" you all.

[sunnmama]

Yay! A support thread!

Chfriend--I can so relate to the hair brushing!!! At our home, *I* simply can not touch her hair. Hairbrushing waits until dad is home with his super-gentle, patient touch. Then she goes "to the salon" (a stool in the bathroom). He sprays her hair with water, and then he treats her to the "salon treatment". Even that is difficult for her, but it is fun enough to win cooperation.

Falling asleep has been a consistent issue for dd since infancy. We have yet to find anything that truly helps on a long term basis (although, with age, we have more and more good nights, and fewer rough ones--but the rough ones are still more common!)

My current dilemma:
Dd is about 4 months into therapy (ot), except that we were "off" for 3 weeks over the holiday (dh was home and interfered with our brushing schedule with all his "activities" , therapy was closed for a couple weeks, and then my gma died and dd and I took an unplanned trip). Really, we did nothing...or nothing but sensory diet activities...for those 3 weeks. But here is the surprise: dd did GREAT!!! She seem really "regulated" (as OT says), and was sleeping well. But she did seem to have increased tactile defensiveness, so I felt committed to beginning brushing protocol again (but not going to do listening therapy anymore--that wasn't going well at all).

Well, unfortunately she is not adapting well to the brushing protocol this time. When I do the brushing, she gets all "unregulated" (read: violent tantrums). Not at the time of the brushing, of course...but during the course of that day. So now I am conflicted....might she just need a break?

Anyway...thanks for starting the thread. Great to have a place to vent, question, discuss, and offer support!

[sunnmama]

Britishmum---I've been wanting to bake bread with dd, as well! But I am so intimidated by the process....knead, rise...knead, rise....lol.

Someone just loaned me The Tassajara Bread Book, which is supposedly some sort of "bible of breadmaking", so I really need to get to the store for yeast and such and just *try* it!

I hadn't even thought of the sensory benefits. Good idea!!

[wemberly]

sunnmama,

If your little one seems deregulated after you've done brushing, it may be your technique. It can be quite tricky to learn to do properly, and as much bad as good can come from improper brushing. To date, dh still can't brush Elliott and we've been doing it off and on for more than 3 years. Just an fyi, not a comment on your ability to brush.

Our latest achievement:

Elliott, who has moderate to severe sensory issues is currently ill. Despite some serious nose goo, he has not freaked out once about ooze issues, and he hasn't had a tantrum while trying to find an available Kleenex box. This is no small accomplishment---every single cold has been impossible before this one, he can't stand the feeling of anything on his face.

[khrisday]

sleeping-UgH!
Yes, my dd has trouble sleeping. I find that a bath before bed is very soothing and calming for her- as well as a very simple and consistent bedtimne routine.

chfriend- have you ever thgought about letting her brush her own hair? That's what finally did it for my dd. I bought her a really soft wooden comb, and told her that it was "her job" to comb her hair now. She has been great with it, but she's 5 now- although I think she was 3 when I did that.

sunmama- we had the same thing happen with brushing. Our OT told us that if it was no longer working for her, that she had probably gotten out of it what she needed, and to stop.

Just a note for anyone who has a dd that likes really low rise panties- Target now has a brand of extra low rise bikini's in the little girls section

[sunnmama]

Originally Posted by wemberly

sunnmama,

If your little one seems deregulated after you've done brushing, it may be your technique. It can be quite tricky to learn to do properly, and as much bad as good can come from improper brushing. To date, dh still can't brush Elliott and we've been doing it off and on for more than 3 years. Just an fyi, not a comment on your ability to brush.

Very interesting.
I think I will let it go until we go to OT next week. Then maybe I will do it with OT observing, and see if she has any adjustments for me to make.

Curiously, the brushing helped her *tons* the first time around. But I don't know if it caused any violent tantrums in the beginning, because--when we began therapy--she was having 2-4 violent tantrums a day, every day . So I really don't know if the brushing increased that behavior or not initially (as I hear some things do? Increase the behaviors initially?).

Hope that your Elliott is feeling all better soon! And on the nose goo!

Khrisday--I just saw what you posted. I hope my ot says the same! Dd is really doing great, and I hate to "upset the apple cart", kwim?

[Shonahsmom]

Thanks for starting this thread.

Things have been going better for the past few weeks for dd (5 y.o).

After going to a different shoe store every couple of days for weeks, we found a pair of shoes she'll wear!!! Yeah!!!! What a completely different world we find oursleves in when dd has a pair of shoes that don't make her writhe in screaming pain! Its wild because it seems that solving (for the time being) that one issue has made her so much happier overall and able to cope with other issues much better.

Gotta run, but thanks again for starting this thread!

[thechrysalis]

Hi guys,
I have been reading this forum for about 2 months now - we had a meeting a few weeks ago with my dd's preschool teachers who think she may have sensory issues (this was after one of the other parents told me that she had heard (from yet another parent) my dd was "developmentally slow" Can you imagine saying that to someone??). We are still waiting for an appt to have her evaluated and it took us awhile to even decide to do that. I still have mixed feelings on it - I am not wanting anyone looking at her telling us her "problems" but on the other hand, if OT will help her and help things run more smoothly at home, then that would be great.

I'm not sure if this is common or not but a lot of her issues at school are not issues at home - she seems very tactile defensive at school, unless she is outside, whereas at home, she is all about hugs and kisses. If one of her teachers tries to move her, she goes limp. She refuses to participate in any type of game where she has to hold hands or touch the other kids. Some of the other things we are dealing with at home are potty training (I am convinced she will never willingly go on the potty. EVER.), sleeping (although this is off and on), interacting and sharing with her brother (and classmates at school) without hitting/grabbing, and trying new foods or even eating the ones she likes without throwing a tantrum.

The big thing with the potty training is that she seems completely freaked out when she feels the urge to go. She had an intestinal virus over the holidays which did not help this. We talk about the potty all the time and she is very enthusiastic about trying but the second we put her on or even get her close, she completely breaks down. We have completely backed off on this but I know that as she gets closer to turning 4 (not until Sept) I am going to start getting worried again.

I worry about her diet - she is very interested in fruits and veggies but refuses to eat ANY except bananas, and that is only sometimes. She is into bread and most things breaded - but I've tried breaded veggies, forget it. She doesn't even like touching new foods. She will occasionally lick something but that is it. It is very frustrating - I nursed her until her brother was born (she was 28 m) so I didn't worry so much then, but now I worry a lot about her limited diet.

Thanks for starting this thread - it has been a relief to read all of your posts!

[LoveBeads]

Yippee! A support thread!

I don't have a lot to report - DD has been through OT and now we are just working together everyday on impulse control issues mainly. We went to a birthday party on Sunday - it was a dance party in the evening (yes, for 4 year olds ). I didn't think DD would go in - the room was dark, the music was loud and the strobe lights were going strong. She did it, though. She wanted me to stay so I did but she really was perfectly fine. I was very pleased. OT is really magical stuff, I can't say enough about it.

Our big struggles now are mostly about her ability to control herself. I don't know how much of that is SID and how much is just being 4. She's trying, though.

Has anyone found that they have gotten more sensory sensitive? I find that I am now having difficulty in bright lights and noisy environments. I guess it's sympathy SID!

[USAmma]

This is great!!

A brief intro: Both my girls have SID.

Abi is starting to outgrow it finally. She seeks stimulation. Toe walking, heavy contact with people and furniture and things, loud voice, has to rub her feet on something to fall asleep, very poor sleep, poor eating, gag reflex. She likes to wear a heavy backpack around the house a lot. I'm finally starting to see a change in her ablility to control her rages. She's listening better and cuts short her screaming when I talk her through it. There's light at the end of the tunnel!! She also has stopped rubbing her privates the last 2 weeks. I have been trying hard to redirect her. In the car, where she rubs on the carseat straps, my IL's bought her a Leapster which she uses mostly in the car. When she's playing the Leapster she can't rub. I hope that someday she'll sleep through the night on a regular basis . . .

Nitara is starting her SID journey. She has severe reflux and severe feeding aversions. She is former FTT but now eats mostly through a stomach feeding tube. She's growing very well, all caught up with milestones, and working with an OT every other week to help with the challenges that come up. She's responding very well to daily swinging on the swingset outside and deep pressure/squeezing of her limbs.

Her big challenges right now are eating (strong gag and general feeding aversion, no appetite ever), wearing clothes and shoes, stranger anxiety, and sleeping. Her reflux is tied in with SID, all related to an immature nervous system. Nitara's big achievement is that we went to the library storytime yesterday and she didn't freak out. She was very stoic, would not let me do the hand-over-hand games (typical of her) but she sat and listened to the stories and didn't freak when other babies got in her personal space.

Darshani

[USAmma]

Originally Posted by Britishmum

It's frustrating that whatever 'works' for other kids just does not work for dd, so all the best-meant advice in the world from others is just useless, and it is depressing hearing it.

So true, so true!

I'd love to tell you what great thing I did to help Abi learn to use the potty, but I guess the best thing I did was stop meddling, give up, and leave it to her.

Both my kids are very big control freaks. It has to be their idea. Abi was the model EC baby (verbally signaled starting at 7 mos.) until she turned 12 mos and decided that was that. I tried all the tricks and methods. I got frustrated with her so much. Other times I tried to be positive.

Finally I told her it was her responsibility. I bought her pull ups and undies. I put her pants and shorts and undies and pull ups in a place where she could reach them. When she wet her pants, it was her job to change her clothes and put her clothes in the hamper, her pull up in the trash.

If we went out someplace and she wet, we went home. Period. I did not carry spare clothes. She started to have fewer and fewer accidents outside after I dragged her kicking and screaming back to the car when she was having a fun time at the playground or someone's house.

When she started preschool for a short time after Nitara was born they had a policy that they would call me if she wet and I had to come get her. They didn't handle it. I told her that and not once did she wet in preschool. She wet at home a lot though.

Finally at 3 years 8 mos old she started using the potty almost all the time. I would hear the lid slam down and the flush and her washing her hands. If she has accidents now it's usually in front of the flush because she waited too long or is having trouble with a buckle or zipper.

Poop she got down earlier, about 2.5, because she's very sensitive to smells and would gag when I was changing her diaper. I told her she could have a mini candy bar every time she pooped and a few days later she was pooping in the toilet consistently.

I say just give it time. Sensory kids have a harder time recognizing signals sometimes, and coordinating those signals into actions. Peer pressure should start to play into it soon. Maybe you can take her to another little girl's house and ask the mom if she minds watching her friend use the potty. Abi loves to watch other kids go pee and they don't seem to mind showing her.

Good luck! Hang in there!

Darshani

[sunnmama]

About potty learning (and the "big potty")...does she have motor planning issues? My dd is behind in large motor planning (related to SID), and although she has long been "potty trained", she can not yet climb onto a toilet by herself. She panicks if you ask her to try. She is 4 in a couple of weeks, and she is just beginning to *sometimes climb off by herself. I am so amazed when I see 2 yo children scramble on and off like it is nothing, lol! Could this be part of the issue?

My dd also has trouble with climbing apparatus at the playground (compared to peers), and is intimidated by the trampoline at OT office, etc. Generally, she is very cautious about things that require her to coordinate her body (but, strangely, she *is* coordinated...learned to skip this week ).

[wemberly]

sunnmama

The motor planning issue is probably a big part of the potty equation for your dd (who is truly scrumptious--great photo of you both!) I know for Elliott, the scramble up was too hard, but he could climb on with a stepstool in front of the toilet--having the stepstool also helps with evacuation, they can use the stepstool to push their feet against. Elliott also needed one of those potty inserts to make him comfortable--he really needed the stability of the smaller seat--he was very panicky without it (let's chat about the time I forgot to bring one when we were in a strange town several hours from home and I made this insane emergency run to 3 different stores so that he could 'go'). Maybe some combination of aparatus will entice your dd too.

[sunnmama]

Paige---thank you for the compliment! I could eat just dd, myself

To clarify, I was thinking the motor planning might also be a factor for Britishmum's dd. But your advice might be really great for both of us! For now, we've just been assisting dd every time, and I was worried about preschool in the fall....but now we've decided to homeschool , so I guess I'm not that concerned about independent potty use now. But adding the seat insert might actually be a great idea for dd at this stage! (she has a stool available, but still will not "scramble on"). We got rid of the potty insert long ago....I'll ask if she wants me to buy another one.
Thanks!

[onlyzombiecat]

We don't have a diagnosis but have pretty much decided dd must have sensory issues.

About the potty- Dd will be 5 at the end of March and has never once used a potty of any kind. She wears a pull up. She is not bothered by wet or poopy pants at all. She has never shown any sign of when she was eliminating- no faces, no grunts, no squatting. At the beginning of this week, I had had enough of struggling with her to get her pull up changed (she would run away) and told her it was her responsibility. I told her I would help if she asked but would not do it for her. For 2 days she went all day with soaking wet stinky pants (it leaked through). It was very cold (single digits). She didn't care. She started getting a rash. The 3rd day I offered more help but had her do more on her own and there has been less struggle this week. I figure it will take time but I'm hoping that if she won't use a potty she can at least start taking some responsibility for changing the pull up.


Dd has had sleeping issues from the time she was 2 to today. It takes very little to disrupt her sleep pattern. She will then stay up all night. I have to stay awake with her or she trashes the house.

Brushing my dd's hair is an ordeal. It is very tangly and was down to her waist. I was able to cut 8 inches off yesterday (still below her shoulders) because she decided she wanted me to. She has been screaming about haircuts before so I took the opportunity and went with it.

Dd eats ice a lot... particulary when she is upset, tired, or overwhelmed (like at a party). She also eats frozen foods- peas, corn, french fries, popsicles.

Dd screams if her nose is stuffy or runny like someone is stabbing her.

She is very sensitive to certain noises. Someone crying, yelling, or coughing can really freak her out for quite awhile. She has never liked to be sung to. She will only ride in our car.

Dd doesn't like playing with other kids- esp. in a group situation like a birthday party. She complains that they are too loud.

She has made many improvements in the last year though.
We are going to be moving and I just hope it will be okay for her.

[BrooklynDoula]

Just joining. I had never even considered that my ds's love of swings, spicey and sour food, terrible!!! sleeping issues, random acts of aggression, etc. might all come together as one related issue until he started to studder and we had him evaluated for EI. At first they didn't think he would get in because he is very advanced, but the social worker order an evaluation by an OT and she and the Speech Pathologist (for the studder) refered him into the program. So, we are scheduled to have our meeting with the state next week and then start therpy. I am very curious. His issues strick me as mild on the whole, but it would be nice for him to be able to be more mellow when his nose runs or he gets paint on his hands, etc. No tantrums from my ds, he just gets a little upset mostly.

Thanks for the support thread.

Megan

[beth568]

Hey! Great news on all the successes here, especially with the potty!

I'm new, and thanks to LoveBeads, I finally feel like I have some answers to what's going on with my 3 year old DD (she was diagnosed with SID last year through Early Intervention, but her OT didn't have much experience). Even though we knew about the SID, it didn't really click that her severe anxiety could be linked to it. And we didn't get the kind of focused OT Sarah really needed.

But, after a LONG talk with our ped yesterday (bless her heart, she worked hard to find help for us), we were directed to this place: http://www.otawatertown.com and Sarah has an assessment scheduled for next week. Thank God - people who understand my child!

I'm so glad to see this thread. People who haven't experienced this with their kids don't understand.

Hugs to everyone!

[LoveBeads]

Beth! I am so happy to read this! Congrats to you and welcome, the women here have so much wisdom to offer. I have found that it is very difficult for me to receive the best advice on the general parenting boards - I think that a lot of the ways I have to deal with DD seem (to a normal crunchy mom) to be way too coercive or unsympathetic (because I really have to push her at times to do things that she is resistant to do, not that I would ever force her but you know what I mean). I really felt that I didn't have a place until I found this board and I have really learned a lot of valuable things.

(for the general viewing SID public!)

Tomorrow I am starting DD on Omega-3 and Omega-6 supplements. I am sufficiently convinced that we have much to gain and nothing to lose. I have become increasingly interested in the connection between mild neurological disorders (SID, autism, asperger's, ADHD) and a deficit in Omega fatty acids. I have spoken to a lot of women (including the manager of my health food store) who absolutely swear to the benefits.

I'll keep you all posted on how it goes! I hear that there is a difference in about a week.

Oh, and by "difference" I am referring to a calmer disposition. I used to have one of those! I will be taking the supplements as well, by the way. Why not?