New here- Sensory disorder DS
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  1. #1
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    Default New here- Sensory disorder DS

    Hi gals

    I'm Pamela. I'm new to this board but not new to the org. I lost my ID when all the changes went down, moved cross country when DH got out of the military and have been dealing with everything in between so I haven't made my way back to the org for quite some time. I've got a 2.5 year old (nov 09- born Oct 09) a 1 year old DD (July 11- born June 11). Dh is now ex military and I did daycare while living in Colorado (our duty station) but now I'm working at a bank. So with all that sai d, no troll here My old user name was MrsHooah2u in case some of you look familiar.. and so now I move on to earning new crowns DH got the snip in Jan so we are done with babies (and birth boards, waaa!).

    Now onto the reason I'm here... In Oct 2011- at my son's 2 year wellbaby we FINALLY got his pedi to put him in for a speech eval (we noticed issues around 12m). Long story short he started to receive services in November while we were still in Colorado. Upon moving to Illinois we FINALLY got his services started back here in May (stupid IL dropped the ball BIG TIME on his services here..). He's been doing well with them so far. However, we had been starting to notice that DS was "different'. He didn't act like a normal 2.5 year old. His frustrations were out of control, he NEVER stopped, doesn't STTN, always going at high high energy. His ST started to notice this and mentioned to me that she felt he may be showing signs of some sort of sensory disorder. So none the less we are now in the process of having him evaluated for that with an OT.

    I guess long story short: I'm looking for the "what to expect" moments of the eval. I'm hoping to get some answers that will help him. It's so frustrating and I'm start to feel more and more overwhelmed with the whole process (normal??). I feel like this should be "no big deal" and it shouldn't be upsetting but the more we get into this I can't help feel things like "will he be normal?" "how severe is this?" "will he be labeled in school (other than his IEP).." "will he 'outgrow' this?" I feel like I'm over reacting advice?? TIA ladies and I'm happy to have this board!

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    Posting Addict wishing4agirl's Avatar
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    Hello and welcome. Your former user name sound familiar.

    I'm Angela. I have 4 kiddos (5 if you count my son's friend who we informally adopted). Two have special needs. Eli was born with a heart condition called Shone's Syndrome, Subclavian Steel Syndrome, Auditory Processing Disorder, has bilateral PE tubes, and some neurological problems from all the previous surgeries and such. And Dakota is high functioning autistic, so has some of the issues you mentioned. As far as I understand and remember about the sensory eval, it was mostly a questionare we filled out that they went by. As far as advice, let yourself feel what you need too. I can tell you Dakota's sensory stuff drives me batty. At times it was honestly harder than dealing with all of Eli's stuff. And his sensory stuff is what I went for help for, but he was delayed in speech. He had SEVERE sensory issues. You couldn't ignore them. He wouldn't eat regular food. He would only eat hard dry crunchy textures (which is way less than people realize). He would choke, gag, vomit, etc. It was horrible. And NO ONE believed me until they tried to feed him and they threw up on them or went into a hysterical, horrible, nightmarish fit I can't even do justice with describing. They then became believers. Although he "eats better now" it is still rough. He won't eat most fruits or veggies. He's up to a handful of veggies and 3 fruits (he literally yesterday decided he liked watermelon). I will tell you some kids really do outgrow this. Some don't and some improve with just some quirckiness about things. You are NOT overreacting. ALWAYS follow your mommy instinct. If you think a dr, therapist, etc is wrong go with your gut.

    I'm always here if you need a shoulder. I truly get the sensory stuff.

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    Welcome to the board! I have 2 daughters, Alana (7) and Madison (5). Alana has asthma and some undiagnosed GI issues, and Madi was born with laryngomalacia (which has likely resolved itself by now) and has RAD which she will hopefully outgrow as well. We've also dealt with some allergies along the way. So while I don't have any experience with sensory issues in my own kiddos (aside from the infant issues Alana displayed) I am an ESE teacher, K-2, and many of my students have these types of issues.

    My biggest piece of advice is to get help, ASAP, and be the best advocate you can be for your son. No one cares about him as much as you (and your husband) and no one knows him as well as you do. I've found that OTs can be some of the most helpful specialists, so if you end up with one that you just don't click with find a new one. I'd also try to find a support group in your area of other parents dealing with similar issues. Like Angela said, it can drive you batty, and it helps to know you are not alone. Also, they may have some great advice since they've been there, done that.

    Glad you found our board and can't wait to hear more about you and your family!

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    Posting Addict wishing4agirl's Avatar
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    Quote Originally Posted by Alana*sMommy View Post
    I've found that OTs can be some of the most helpful specialists, so if you end up with one that you just don't click with find a new one. I'd also try to find a support group in your area of other parents dealing with similar issues. Like Angela said, it can drive you batty, and it helps to know you are not alone. Also, they may have some great advice since they've been there, done that.

    Overwhelmingly true. Our OT is the one that realized Dakota was on the autism spectrum. It's how he got past a some of his sensory issues so that he could participate in art projects in class and didn't flip out when he got dirty or stuff got on him. And connecting with families who deal with similar issues is a sanity saver. It is very nice being able to send Dakota over to my friends house who understands him. That way she can push him in some areas and step back in others. In fact it is thanks to that dear friend that he eats watermelon. And at the same time, I can have a break.

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    Insert huge sigh of relief here...

    Hi ! haha! This has been harder on me that I totally expected. We have been told by two of his ST that they do not feel he is autistic, so we are ruling that out. They mentioned ADHD but that is insanely hard to DX at this age so that's what sort of started the whole sensory thing. I got all our paperwork sent in on Thursday to our case worker (who mind you is a total ding bat!) so I will be calling her tomorrow to make sure we can keep moving trying to get him set up for the OT eval ASAP. Time is NOT on our side, he'll be 3 in October and then he gets out of the EI programs. We're hoping to get the OT eval done here in the next few weeks (days would be ideal!) and then we will meet with the local school to discuss getting into their preschool program so he can continue to get services. I was told by our case worker that DS should be 99.9% shoe in for the program due to him already being with EI for speech. If we can get the OT/sensory thing on his IEP then they will for sure rule him into the program; we'll likely have his IEP meeting sometime this month or early August.

    I'm glad I'm not the only one with "frustrations", I always end up feeling so guilty but he just cries and screams and makes a tantrum over everything. It's the source of MANY frustrations in my life and I hate to say that but it's true and it makes me feel like a horrible person to "resent" my son's personality.. (wow, 'saying' it makes those feelings so more real.. I've really kept that statement bottled up..). I don't have ANY IRL friends that even have kids, let alone ones with any sort of special needs. I have another group (from the org, his birth group) that has a FB group and we chat often and the times I've brought up some of my concerns I get a lot of the "he's a 2 year old; it's normal...". There holds truth in the fact SOME of the things he does are normal 2 year old things, however, we are on the extreme end here. So needless to say, I am insanely glad I found you gals here!!!


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    When Madison was about 18 months old and at the peak of her health issues she was a nightmare to live with. She was always fussy, had frequent head-banging tantrums, and would actually growl at people that tried to interact with her. We pretty much had to limit our activities and stay home with her as much as possible because her behavior was so bad. (Sleep apnea is an evil thing, lol) Many nights I'd cry myself to sleep because I felt awful guilt that it was difficult to spend quality time with my child without becoming frustrated and doubting my parenting abilities. You certainly aren't alone in those feelings and it is okay to say it aloud. We do understand!

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    HI!

    My step-son Skyler has recently had heart surgery and is now to GREAT!

    ANyway, I haven't dealt with sensory issues and acting out, but I have a couple friends who have had nightmare issues and have had a lot of success through changing the child's diet.

    Some of the things they've had success with is removing ALL sugar and refined flour products (simple carbohydrates, like white bread, etc...) In essence, following a high glycemic diet (for diabetics).

    I know it's not EI and therapy, and I'm not saying it's mutually exclusive. I just thought I'd put it out there since it's something that you can try yourself to see if it helps.
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    I went gluten-free last fall after a friend did and then his wife did. It helped his autoimmune disease and her anxiety issues. For me it's helped my IBS and my endometriosis.

    I don't have actual experience with sensory stuff, but going gluten-free has helped so many different things in people I know that it seems worth a shot. It's an adjustment! For us we rarely buy gluten-free substitutes. Instead we just eat differently. Instead of a sandwich I'll have a salad (with a hardboiled egg, deli meat, etc) in it. Instead of spaghetti and meatballs I'll have mushrooms and meat sauce. It takes getting used to but the health benefits have been astronomical.

    Good luck with whatever you try!
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  9. #9
    Posting Addict wishing4agirl's Avatar
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    Quote Originally Posted by Alana*sMommy View Post
    When Madison was about 18 months old and at the peak of her health issues she was a nightmare to live with. She was always fussy, had frequent head-banging tantrums, and would actually growl at people that tried to interact with her. We pretty much had to limit our activities and stay home with her as much as possible because her behavior was so bad. (Sleep apnea is an evil thing, lol) Many nights I'd cry myself to sleep because I felt awful guilt that it was difficult to spend quality time with my child without becoming frustrated and doubting my parenting abilities. You certainly aren't alone in those feelings and it is okay to say it aloud. We do understand!
    Dakota to this day growls at people.

    Don't feel guilty. It's really very normal. I'm glad you can rule out autism. As I have heard LOTS of people talk about changing their children's diets and how it ended up changing their behavior. Gluten and dairy are two very key culprits. Take heart that once you deal with some of the sensory stuff and/or know how to manage things that set him off it does become a bit easier to deal with. I don't think I'm wording it the way I want to so I hope you understand what I'm getting at.

    And yeah I use to get the "it's normal for this age" thing ALL THE TIME!! It drove me just as batty as his behavior did.

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    Mega Poster aimee05's Avatar
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    I have a 4 year old who we think has a sensory dissorder as well. He just turned 4 so now I have to find an OT not through the state so this process has been kind of stressfull. Anyways, I'm hoping that our elementary school can evaluate him and can give him the therapy that he needs. I did the sensory checklist that is online and went through the website and the more I read about it the more I feel like I am understanding my son. Even though I am not sure this is what he has for sure, it just seems like this is the answer to all the frustrations I have been dealing with for 4 years! I didn't even know about sensory disorder until my sister told me about it, her son has severe sensivity sensory disorder and when she came to visit for a few weeks she noticed how my son was, mentioned it to me after I had told her that I thought he had anger issues. Which of course that happens all the time! So now im just waiting to hear from someone!

    And I used to think, "oh it's just a phase, he'll out grow it" but then the next day he would just have a completely horrible day! The worst thing right now is convincing my husband that his behavior is not normal. My husband is gone every other month sometimes longer than a month At a time,so he doesn't see how he really behaves. He doesn't notice the little detailed, or the eating habits or fits over wearing only certain clothes,or using certain chairs. Having to do everything in a certain routine.... And the ENERGY! Okay, sorry. I'm getting carried away.
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