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Thread: Officially joining you all, ds was just diagnosed

  1. #1
    pepperlc is offline INCIIDer - A Community Creator
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    Default Officially joining you all, ds was just diagnosed

    with SPD. The evaluator thought that it was most self-regulation issues. We had our first OT appt today. The therapist seems very very good. She saw a lot of sensory seeking proprioceptive behaviors. She said he also has motor planning issues.

    She had him an a hamock swing for a long time. He LOVED it. She also made a sandwich with him and lots of stuff. He crawled under a giant bean bag chair, played tug a war and also jumped on the mini-tramp and then jumped onto the bean bag chair. He loved it all but towards the end started biting the rope. She saw his need to chew to self calm.

    I didn't bring his chewy tube in (it was in the car) so she gave him a tube that he could chew on. It helped but he discovered that it was also a whistle and that got him wound up again. So we convinced him to let me tie a knot in it and she gave him a regular drinking straw to chew.

    She also gave him this rubbery lizard to hold since he always needs something in his hands.

    All of it made it much easier for him to listen and overall he was calmer. We were even able to go to lunch after it just me and the 3 kids.

    She wants to wait on the theraputic listening, brushing and joint compression. She wants to really learn what he needs and doesn't need and to do things for about 3 weeks and learn from them and then add more. I'm up for that.

    So my jobs this week are to get him some time circling on a rope, jumping and crashing, jacob sandwiches, crawling under heavy things and tug o war. The best I'm going to be able to do with the circling is what I can do at the swings at the park. She wants to see how he reacts to these activities to know where to go next.

    I am so excited. Maybe we can finally find things that really help him feel better and good about himself. I had to bring Reuben and Faith with me. They played in the waiting room while I went in with Jacob. Reuben was VERY jealous of Jacob. The fact that not only did he get my time but someone special but also got 2 "presents" afterwards. This is probably going to be an ongoing problem since they have to come with me each week. Its the only time I have available to do it.

    So I know a bunch of you are dealing with similar things. I look forward to being here.

    Sincerely,
    Karen
    Reuben and Jacob - 5/21/03
    Faith - 5/8/04
    Last edited by pepperlc; 10-30-2006 at 03:52 PM.

  2. #2
    Suzi is offline INCIIDer - A Community Creator
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    Default Welcome Karen!

    This board is great for information and support. It sounds like you got a great eval and and great OT!!

    Suzi
    Katy-10-dyslexia and ADHD
    Becca-6

  3. #3
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Hi Karen

    Sounds like you're off to a good start. My dd started OT at 2 years 9 months and responded very well. We have the Ps and Qs chewy tubes and both my girls love them. I keep a box of "chewies" with the other toys in the playroom, and if I see dd chewing her sleeve or her fingers I encourage her to find a chewy.

    Hope all goes well!
    Hugs,
    Ann

  4. #4
    redd89 is offline INCIIDer - A Community Creator
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    Default

    HI Karen
    Nice to see a familiar face from the mult's bb! One of my twins is having therapy now as well (OT and behavior). She is a big time sensory seeker with behavior issues (poor eye contact, poor interaction with others).

    So far my other twin seems fine since she plays along with the therapist as well. (EI comes to the house). No advice for you there. Maybe you can put him in a class with just you, like gymnastics or something? I'm sure time and child care is an issue with you, just like me.

    Sounds like your OT is great - we have a lot of the same kind of activities to do with Danielle. She loves it and has improved dramatically in only 3-4 weeks. Take care and keep us posted.

    Janie
    Rachel 10/20/02
    Paige and Danielle 3/23/04

  5. #5
    Christine S Guest

    Default Sounds like a great start.

    I wouldn't have any issue waiting on the music, brushing, or anything else. There is no telling how YOUR child will react to these things so it's better to start small and work your way up to them. A lot will depend on their individual issues, but a lot also depends on their personality. Ansley took immediately to the brushing and it had a noticeable affect on her. Tobin did not take too well to it and was actually MORE aggitated when we did it often.

    As for the swing...we have several. We started with a purchased sling swing (probably what you were using) in the child size from Southpaw. It was around $300 for the whole set up (equipment to hang it, free swing, etc). We have since bought a coccoon type swing from Ikea, and have made a platform and trapeze ourselves.

    We originally had the swing set up in our unfinished basement. At the moment we simply have no place to put one so it's at a friend's house (their kids do OT as well) and we'll go over there occasionally to use it. After we move we'll set up the hardware in Tobin & Amelia's rooms, plus another in the basement family room. The swings are BIG here, though Ansley being more sensory averse tends to not like them as much.

    We also have a rope/wood ladder which I will use in a basement closet. It's hard to describe, but we will have this wrap around closet (has 2 doors, goes around under the stairs in a U shape) which I will turn into a sensory area. Half will be the *princess* side with a castle loft (you climb the ladder to get into it) and the other half will be a *space* side with a cushioned moon area that will have plenty of pillows and serve as a nice *comfort* zone. There will be other various sensory things involved, but I haven't figured out ALL the details yet. I may add some rock climbing to it as well. Anyhow, if you have a space to do something like this, think about it. You can get pretty creative in a small space and do it rather cheaply too.

    Now for the other kids...If they have to go along to the therapy sessions, they should get some sort of treat as well. You can ask your OT if there is anything they might be able to do/play with in there w/o causing a distraction. You can bring along a bag of special toys for them during these times. You can have your own goodie bag of treats for when they are done. Once you are comfortable with the OT you might even be able to sneak out for a short time (depends on your & the OT's level of comfort there, but I've done it in the past). You need to also make it clear to the others what THEIR jobs will be. It's not easy for the others to not be involved in what looks like a great deal of FUN.

    I'm glad you are on your way now. Remember there will likely be setbacks here and there, but it's the progress in the long run that matters.

    C

  6. #6
    sugarsue is offline INCIIDer - A Community Creator
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    Default Hi and welcome over here!

    Congrats on the diagnosis. I am sorry but also glad because now you can get what you need for Jacob and your family!

    We had the waiting room problem too for the month before Savanna got diagnosed. It was so painful for her to be left out of the fun. I tried to keep her at day-care when I could but I know you don't have that option right now.

    It sounds like you are off to a great start! Things will really start turning around for you. Don't get discouraged if it takes longer than you would wish for. It will pay off!

    Susan

  7. #7
    pepperlc is offline INCIIDer - A Community Creator
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    Default well one good thing is i realized i need to keep

    a chewy tube with me all the time. i put it in his backpack today so I would have the moment he came upstairs to greet me. I kept forgetting it in the car. I gave it to him immediately today and he started chomping away. Don't know how much it helped but clearly he was ready and needed to chew.

    i've been trying to do the things she wanted me to try but teh swing is hard because well we don't have one yet and I am unable a lot of the time to get them to the park after naptime. There are no swings at the playground at their school.

    so that is something i'm working on. I am having him crawl alot in the house. he LOVES it so i'm hoping it is providing him with something he needs. I know he is loving the extra attention from me so if nothing else he is getting some positive time with me.

    i'll keep ya posted.
    karen

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