Someone please HELP me!!! Please?

iVillage Member
Registered: 03-01-2005
Someone please HELP me!!! Please?
13
Tue, 03-01-2005 - 9:18pm

I dont know if this is the right board to post this on or not. My son was diagnosed with sensory integration this past July. He is in occupational therapy. This child is just not happy with life. He will not and just cant wear clothes. This morning I put 10 different outfits on him and he would scream and cry and SCREAM and totally just freak out, I finally took everything off him and cryed myself. I just dont know what to do. He cant wear socks without crying and acting as if he is in PAIN! Crys and crys and CRYS! Will NOT wear shoes, it is winter here and it is so embarassing to carry my 2 1/2 year old around with NO shoes on because he thinks they just feel so funny on his feet that they are going to kill him. He will barely wear a diaper at all and is no where near potty training. At night he acts like his diaper is huring him so badly (believe me, its not, he does NOT have a rash and the diaper is like 2 sizes to big) so he goes without a diaper to bed, without ANY clothes to bed and pee's everywhere and then freezes because he is wet and has no clothes on. If I MAKE him wear clothes to bed then he WILL NOT sleep until I take them off, he would stay up all night if he had to. Everything just bothers him, I mean EVERYTHING! He hates the feel of everything.

He is just so unhappy. Most of his whole day is spent crying and begging me to take something off, stop making him eat, stop brushing his hair, stop bathing him, stop everything that has to do with strange touching like eating and that type of thing. He HATES being the least bit dirty. He will scream for hours about that too. He HATES getting anything on his hands and therefore doesnt eat because he still cant use a spoon.

He hates food, the child is barely living on anything at all. He hates the texture of everything. So far today he has ate 1 bite of cookie, 1 teaspoon of noodles, and a cup of juice! That is it and he is not hungry because the fear of texture keeps him from eating a bite.

He doesnt talk that much. Says a few simple words and that is it. He can say things like ball, cookie, i bye bye (which means i want to go bye bye) So its not like I can talk with him. He is 31 months and I still cant "reach" him because he just cant talk.

How do I get through this with him? I want him to live a normal life. He HAS to touch some things in life like clothes and shoes!!! AND FOOD!!! He cant go hungry forever! He also gags on EVERYTHING he eats!

What will help this child?

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iVillage Member
Registered: 07-14-2004
Tue, 03-01-2005 - 10:33pm

First, welcome to this board.(((HUGS))) sounds like you've had a rough time and so has your son.

 

 

 

 

 

 

&nbs

iVillage Member
Registered: 11-16-2004
Wed, 03-02-2005 - 7:46am

You have come to the right place. We all know how hard it is to live with a kid with sensory issues. I am also am OT so I am going to come from that perspective for you. I have questions and then some suggestions. You son sounds like he has severe sensory defensiveness. Where is he getting OT from? Is it early intervention? Have you been to your dr lately? Have he had a full developmental evaluation? Are you doing brushing? If you aren't in private OT I would try and get a referral from your dr if you have insurance that will cover it. I think he would benefit from some intense therapy (like every day for 2 weeks). Not every private clinic would work that way though. I would make sure you tell your OT how severe things are right now.

On a parent level I know how overwhelming things can be and how hard it can be to be persistant to look at every option out there. But you really need to do that for your son asap. Neither of you can live like this. We can be your cheering section for just calling your dr, making a new appt etc. You sound so overwhelmed to me and I truely believe there is help out there for your son.
Michele
Marissa 4/99
Noah 10/3/03

iVillage Member
Registered: 10-26-2004
Wed, 03-02-2005 - 8:37am

You are SO in the right place! My daughter is also extremely tactile defensive with clothes (she is 6) but she doesn't have as many of the oral issues as your son. I have the same question as Michelle, "Is your son in any kind of OT? Have you started compressions, deep pressure massage or brushing? Do you know what we are talking about when we mention these things?" Until last year, I had no idea what was wrong with my DD and we just managed as best we could (NOT VERY WELL). We lived in a quiet nightmare because no one seemed to understand. Don't ever do that! I'm glad you found us because there are a lot of good ideas of where to go to for treatment, how to go through the school system if necessary, early intervention, etc. Plus, we all understand to some degree and will do our best to encourage you and let you know you're not alone. I'm so glad your son has been diagnosed because there is help out there. My DD was evaluated in January of this year and has been in OT with someone specifically trained to deal with sensory issues in children. While we still have problems, the good news is that we have already seen progress in that short amount of time. Let us know the answer to the questions and maybe someone can be more specific in helping you. You might want to read this article, since my child is tactile defensive it meant the world to me to read this. http://childrentoday.com/resources/articles/dsi.htm
Hang in there and know that you are not alone!

Angie

iVillage Member
Registered: 03-01-2005
Wed, 03-02-2005 - 9:31am

Yes my son is in OT. His therapist is such a darn B*Tch!! I had the therapist changed, but then that therapist left and only left this awful therapist that we started with and she is just so mean. She held Kade down to put frozen UNSWEETNED lemon juice in his mouth (said it would help with the gagging) but Kade almost choked on that, and was fighting for air.

Kade comes into the room and she makes sure to say first thing "Kade your NOT playing with MY toys today, your going to do as I say and no your not running to your mommy"

Once she was holding him down (which I think was just out of spite) I grabbed him from her and she looked at me and said "dont you dare grab him" ummmm...he is MY child and she was laying on top of him!!!! She is just hateful to him and he is soooooo scared of her. She said that being strict and grouchy cures children with SID. Yeah my rear end!!! She isnt brushing him, she isnt doing crap but being mean to him!!! I feel so badly for my son that she hates him. I mean I know he is very difficult and sometimes has a terrible time warming up to people, but since he is only 31 months you would think she could get rid of some of that hate she has and realize he is just a toddler/small child and that she cant hold grudges against a child, but no she does things her way and honestly does NOT like my son. I can tell by the way she looks at him, almost in disgust!!!

Kade wear these little braces on his feet because he flaps and slaps the floor with his feet when he walks causing him to fall TONS, they said that was sensory and put braces on his feet. Well, he will NOT wear those and it is sooooo frustrating because they said if he doesnt wear them at all that his ankles will only become weaker! What am I suppose to do? MAKE him wear them? I think I should at least try, do you?

:( :( :( :(

iVillage Member
Registered: 11-16-2004
Wed, 03-02-2005 - 9:50am
Ok, where is this OT through, EI? You need to stop seeing this OT now! There are people in this profession who don't understand SI issues. I worked in an EXCELLENT clinic for kids with CP, motor issues, etc. My supervisor was amazing with these issues. However I evaled a kid with obvious sensory issues (he was 7) and she said to me, he is just a clumpy ackward kid. I was so torn. I wanted him to get good therapy but knew were weren't the ones to provide it. My point is, there are OTs specifically trained in sensory issues. You need to see one of them NOW. I have known kids whose teachers, etc treated SD kids this way, and it doesn't work. It just makes it harder to treat later. If you are getting services through EI call and talk to a social worker. Tell her what is going on at home (you don't need to tell her everything about the OT if you don't want to just tell her it isn't helping). What state are you in? The services vary so much state to state.
Michele
iVillage Member
Registered: 10-26-2004
Wed, 03-02-2005 - 4:24pm

How horrible! I know that you must be feeling overwhelmed and I know that you feel like you need help but your OT does NOT sound like the person your son needs to see. Who recommended her and is there a reason you can't switch therapists again? I know that it can be difficult to find a pediatric occupational therapist that is trained in sensory issues but that is what needs to happen or I'm afraid that your son will never get much better. Since your son is so tactile defensive, I cannot imagine why anyone trained in sensory issues would not be doing compressions and massage/brushing therapy. Which it might be helpful to know that once the OT trains you on the method you and your husband are the main ones responsible for the treatment. For instance, we (my husband and I) do massage therapy and compressions on my daughter 6 times a day. We have to travel to another city which is almost an hour away for her OT (no OT is trained in sensory issues in our town), so our OT does the massage and compressions one time during the session for us since it would mess up our schedule to do otherwise. Also, once you find a TRUSTED therapist it is probably a good idea not to stay in the room unless necessary because it can distract your child. Our therapist has a room we can go into to watch the session through a 1 way viewing mirror if we want to stay and watch. Therapy for tactile defensive children is not always easy because they do have to be challenged to do things that they don't want to do BUT it should never be truly painful and while the OT may need to be firm they should never be cruel or mean. I have no idea where you live (I'm in North Carolina) but I will post some websites that have lists of pediatric therapists trained in sensory issues and some other websites that might be helpful. I called several places before my daugher was evaluated and started treatment to ask them if they had therapists trained in sensory issues, I explained my child's problems and asked them if they thought they could have her evaluated and treated, and then I asked them what were the possible methods they might use in working with her. I hope all goes well in finding help for your son because it sounds like you are really just beginning the search. While my DD is new to DSI treatment, I am so thankful that we are working with some great people and all has gone so smoothly because I have heard more stories of people having problems getting the help they needed than otherwise. Here are the websites and please keep us informed how things go:

http://www.sensoryint.com/

http://www.sinetwork.org/spdnetwork-cgi-bin/search?id=189&category=Occupational%20Therapist

http://www.bigsplace.com/SID.html

iVillage Member
Registered: 09-20-2004
Wed, 03-02-2005 - 5:31pm

You poor thing! I know you are screaming for help and I hope we all give you a lot of advice that will help you and your son. First of all if you haven't yet contact early intervention. I'm pretty sure he will qualify for speech services and ocupational therapy. They will be able to lead you in the right direction. In the mean time read the book the Out of Sync Child and also The Out of Sync Child has fun. This will help you understand and give your son sensory activities that will help mature his nuerological system. Again I feel for you and what you are going through. YOu found the right board for help and advice.

Welcome,

Kim

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iVillage Member
Registered: 11-01-2004
Wed, 03-02-2005 - 7:41pm

Oh sweetie, first of all HUGE (((((((((((((((((((HUGS)))))))))))))))))).

               

 

iVillage Member
Registered: 03-01-2005
Wed, 03-02-2005 - 9:24pm

Thank you to each of you for your words, advice, and the support you have given. If only the people working with my son were so knowledged then he perhaps would be on the road to recovery.

My son is in early intervention. He see's the OT twice a week at a local hospital as well as the speech therapist. He also has a therapist who comes to our home to have "floor time" she doesnt work with sensory though.

Everyday is a battle for my child and much of the time I end up in tears, my husband and I are short tempered with each other because we are at a loss as how to help our son. I mean what do we do when we HAVE to go somewhere and every peice of clothing he says "bites" or hurts!! Every shirt I put on him this morning he said "hurt hurt" "it bite it bite" I took the tags out of 10 shirts today and made sure they were soft soft and short sleeved and they still made him miserable, I mean if you could only see the way he acts as if his whole body is covered in push pins!!! Then we got to the pants ahhhhh!! that went on for an hour until FINALLY we found a pair of nice soft pants that he was partly okay with, but still said they hurt and bite. The shoes!!!! Honestly this went on for like 2 whole hours! We drove 40 miles away today and after about the first hour and half I could not take ANY more and I reach around the back seat and took both of his shoes plus socks off and slung them in the back of the car to the main back.

When we got to the resturant I wrapped him in his blanket tightly and made sure no one saw his bare feet (it is like 10 degrees here today and 4 inches of snow on the ground) we got into the resturant and I let him pick whatever he wanted from the buffet (a cookie!) we got to the table and he had to look at the cookie first, then smell it, then fondle it, then smell of it again, then look at it, and finally LICK IT! And then FREAK COMPLETELY OUT!!! Ran from it actually and didnt eat ONE bite the entire time. Of course he ran around the room licking EVERYTHING! Licked the table, the floor, my chair, my husbands leg, and everything else he could lick. What is up with that? He can lick the nastiest things, but cant eat food???!!!

We made it back to his OT appointment and I tell her how life with him is right now and she tells me "oh yeah must be his age" Must be his age?? I have never in my life seen a 2 year old struggle with life like this!! I have seen them whine over things, but honestly my son's life is limited. I told no way I didnt think it was just the "terrible 2s" like she said. She said okay well maybe we should start brushing him. I said that would be great when can you start? She said well I dont know. She has been saying this since July 2004!!! I am suppose to go back Friday and get the brush and she is suppose to show me how to use it.

We will see.

One thing I want to know is once she starts the brushing should she give US a brush to use at home? Or does she do all the brushing?

Thank so much!!!

iVillage Member
Registered: 09-30-2004
Thu, 03-03-2005 - 6:18am

I just wanted to say that you

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