yet an other evaluation

Discussion in 'General Parenting' started by Ktllc, Sep 28, 2011.

  1. Ktllc

    Ktllc New Member

    Everything is ready for a long day tomorrow. Big boy in school (Early), baby girl in daycare (even earlier) and off I'll go with V for his Occupational Therapist (OT) evaluation. It will be a long drive, but they are supposed to be "amazing". No way I could drive there for on going therapy, but I thought we need the best at least for the evaluation.
    Sarted reading "the out-of-sync child" and it really resonate.
    V is so excited to go to the "gym". lol
    He loves moving around, physical activity, feeling stuff. I guess it will be fun for him and hopefully the team can really see what is going on.
    I'm anxious, finally we might approach a diagnosis and a real plan of action.
    If sensory processing disorder (SPD) is confirmed, I really plan on having a sensory room for him downstairs.
    I was looking at him play outside and truely believe our big yard has "saved" him. He gets into everything (sand, water, stones, mud), runs, jumps (seriously gotta watch him... he has no notion of danger), rides his bike, crashes his cozy plastic car, etc... And he is soooo happy doing all that.
    And I believe it is more than just typical boys' stuff. My oldest boy likes it of course, but not in the same intense way.
    And his weighted blankets works wonders! No problem following a sleep (without melatonin! yeah!) and last night he actually slept through the night.
    As far as bed wetting... um not so good. Maybe Occupational Therapist (OT) can help there?
    Please, let us have some answers tomorrow!
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Occupational Therapist (OT) may or may not be able to give dxes... but will definitely highlight issues AND strategies/recommendations/etc.

    A good Occupational Therapist (OT) is worth it. We've got "average" here... and very expensive - but closest "good" is 7 hrs one way, so...

    Hoping the day goes well!

    Make sure you pack extra drinks and snacks - he'll need it. This stuff can be really intensive - not so much physically, but mentally - and you don't want blood-sugar drops to confuse things!
  3. buddy

    buddy New Member

    I have worked with kids where brushing protocols or other sensory integrative methods did help with potty training. In my son's case, Occupational Therapist (OT) was and is invaluable. If a weighted blanket works, consider a weighted vest. My son was given one at school that looks cool, like regular clothes and he asks for it even when he is in the middle of a melt down. He also has a squish vest (scuba material with velcro that can be wrapped tightly around him to give him that deep pressure feeling. He is really a sensory kid so also can use smells on cotton to help him calm or focus. Loves lotion (some kids hate it due to texture) mine loves it because of the smell. Other smells like coffee breath will send him nutso. I hope you find tons of help where you are going. It is worth it if you get a good Occupational Therapist (OT).
  4. Liahona

    Liahona Guest

    Hoping for a great day for you!
  5. Malika

    Malika Well-Known Member

    Very best of luck to you for the evaluation Klltc - though perhaps luck doesn't come into it :)
    You are doing such a great job of getting information and help for your son. It will surely all pay off. by the way, if it's any comfort, I feel like I am "getting there" with my son's wetting the bed. I have stopped putting a nappy on him, bought a good mattress protector, and nine times out of ten he now sleeps through the night without wetting it. So it may just be a question of the right time...
    by the way, what is a weighted blanket that I hear about here? Just what it sounds like - a blanket with weights on??
  6. Ktllc

    Ktllc New Member

    Thanks for all the encouragement.
    We are back and although V liked the activities (he crashed on big balls, trampolines, etc the WHOLE time), it was hard for him emotionally. So much stimulation, and when the Occupational Therapist (OT) would "push" him a little, outside of his comfort zone or level of control: he would get scarred and refuse the activity. By the end of the 2 hours, he was in a full tantrum :(
    It is the first evaluation that reveals the true V. At least the one part of his character that is sooo hard to deal with.
    The Occupational Therapist (OT) saw 3 main issues: proprioceptive issues, motor-planning issues and auditory issues (although the last one will have to wait until he is 6 and can be seen by an audiologist specialized in Central Auditory Processing Disorder (CAPD)).
    Now, I really have to look at local resources... I'm afraid there are few. The Occupational Therapist (OT) did say that he needs way more than what the school would offer. I kind of figured...
    I told her I planned on putting a sensory room together for him in our basement. She will write a personalized plan to help us. I'll have to see what we can do without breaking the bank (too much).
    Seriously, the facility and Occupational Therapist (OT) were so amazing... almost makes me want to move! lol
    She said that when we start regular therapy we should see improvement in his behavior i a bout 4 months time (just a guess of course). The real issues (proprioceptive and motor-planning) will take a lot longer though.
    Is he going to require Occupational Therapist (OT) for years to come?? sigh...
    You know that mixed feeling: glad to have an answer, sad to confirm such a complicated problem.
    Buddy, I did think about a weighted vest. Just not sure when and how much we should you it. I've read conflicted opinion on that: not too much or as much as the kid wants it??? Maybe I should wait for the Occupational Therapist (OT) that will work with us?
    Malika, a weighted blanket is filled withtiny marbles that add weight. V uses one that weights 6Lbs. They work good for sensory issues.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    If you are or have access to an old-fashioned DIY-type person (or multiple)... everything from building stuff to sewing/upholstery/whatever... an awful lot of this stuff can be home-made for very little $.
  8. InsaneCdn

    InsaneCdn Well-Known Member

    Oh - and about the testing in general? Occupational Therapist (OT) reports are taken seriously by others in the medical community... Really helps that the Occupational Therapist (OT) saw the whole scenario.

    I'm just guessing... but part of the whole meltdown? might just be neuromotor fatigue - as in, even what he does do, takes too much motor-planning, and so leaves him wiped out...
  9. Malika

    Malika Well-Known Member

    A sensory room sounds great, Klltc. Again, excuse my ignorance, but can you explain more about what this is and how it helps? I am imagining a big, padded room full of things to jump against and textures/surfaces to play with? Also, what is proprioceptive? And motor planning? Just on the assumption that there might be others coming here who also don't know...
  10. InsaneCdn

    InsaneCdn Well-Known Member

    Motor-planning is sometimes called neuromotor... or several other things that slip the top of my mind right now. Essentially, many motor skills issues have to do with muscles and tendons and nerves. But Neuro-motor issues have to do with the way the brain processes neuro-motor information... and prioperceptive if the other half... that is, the brain has issues taking in feedback about what the extremities are doing (how hard are you holding that pencil? how far are you moving your arm? when are you releasing that ball?) and problems in giving precise directions to the extremities.

    It can exist as a stand-alone condition, or co-morbid, or part of certain dxes (like Autism Spectrum Disorders (ASD)).

    In a sensory room, every item that is in there is designed for very specific reasons, which the child really doesn't understand on any level but intuitive... they are drawn to this stuff, and it helps them. Sometimes, an adult will direct somewhat, depending on the situation.
  11. Ktllc

    Ktllc New Member

    Insane, pretty good explanation! I'm still learning everything and it is not easy to exlain in simple words. lol
    Proprioception can also be explain as how you feel your body. For instance, V does not feel it therefor he has an intance need to crash, jump, pull, etc... His brain is craving for feelings.
    Motor planning is what your body needs to do in order to achieve a goal. For example, V wanted to climb in a vertical tunnel. He needed to build stairs to achieve that (the big squares were right there). He could not do it. He knew he had to go up in order to enter the tunnel, but could not come up with a solution. Even when the Occupational Therapist (OT) suggeted steps and showed him... could not do it.
    I ask if it was his state of overstimulation that did not allow him to solve the problem. The Occupational Therapist (OT) said it is hard to know, but proprioception and motor planning often come together (the issues that is).
    I'm reading the "out-of-sync child", lots to learn and understand.
    But sensory processing disorder (SPD) is bassically a neurological disorder of the nervous system.
  12. InsaneCdn

    InsaneCdn Well-Known Member

    In my experience, overstimulation does not prevent solving problems... unless/until meltdown at which point nothing can be solved, of course. Even with overstim going on, the "suggestion" method should have kicked in.
  13. InsaneCdn

    InsaneCdn Well-Known Member

    Oh, and if you want some more reading? <ya, right> is run out of McMaster's U. (ontario) - by research OTs.
    Deals with all sorts of motor skills issues, really top-notch stuff.
  14. buddy

    buddy New Member

    re: weighted vest....
    yes, for both the weighted tools and squish kinds of clothes, they do say they wear off after a certain amount of time. Like you know when you have something touching your arm but as time goes on you don't feel it? I was told it is like that. But over the years what has come out of multiple opinions and just plain trial and error is that you do what works for your child. For mine it seems the physical sensory help definately is there but perhaps it is partly that he simply has it and by this age is thinking it helps-anything to help redirect his thoughts. I have heard things like 20 minutes on/20 minutes off etc. but that is a lot of transitioning for some kids. I have been told no damage (as far as anyone I have ever talked to about my son or any therapists I have worked with as a sp.lang.path) can happen if it stays on but it just may not work well after that time. Certainly this is not my area so I dont know if there is other information that would disagree with that opinion. I hope the report is well written and so helps support your getting all of the services you are asking for.

    Does your county have any funds for families with special needs children. If there is a daughter department or similar kind of set-up you may find yourself a grant (either one time or monthly) that will help fund the sensory room. When I owned my house we did that with a swing etc. I glanced quickly at NC dept of health and human services page and it does seem they early childhood case management (voluntary to help access resources) and funding, consumer directed waivers etc. Could be worth a call. Before my son got a waiver we got a family grant of 99 dollars a month (this is not welfare or anything...I worked and had a good career, it is for any family with extra costs beyond typical care for a child). Even that would help with materials. Or can use it for alternative therapies that your insurance wont cover. Every county is different so you could check it out. If they tell you there is a waiting list for the financial types of t hings, sign will have your child a long time so if even in 5 years he comes up on the list it will be worth it. You are on a good track, sorry there is not a lot of choice in your area, hope you find something that works for you.
  15. Ktllc

    Ktllc New Member

    I was just looking on the internet and started pricing stuff I kow we cannot built (I can't sew.. I tried but really not for me).
    It can get a "little" pricey.
    I had never thought of getting some type of grant. All that is still so new.
    This year, I will take him to the Occupational Therapist (OT). Turns out the team that did the evaluation has a satellite office about 50min from the house.
    When they called to let me know, that was really good news.
    V will not go to preschool on Fridays but that's ok. He needs Occupational Therapist (OT) more than school right now.
    Next year, Kindergarten... probably won't be able to skip school then. That's where the sensory room will invaluable!
    I'm trying to take it one day at a time, but I was told that school Occupational Therapist (OT) is not enough for V... worries me.
    I guess I have to focus on today.
  16. susiestar

    susiestar Roll With It

    NOW is the time to get "The Out of Sync Child Has Fun". Same author, even more amazing book. It is CRAMMED with activities to provide various types of sensory input. And even more ideas for ways to do it cheap cheap cheap. I actually recommend that people get the first book from the library and the has fun book from the bookstore if $$ is tight. We actually had to get a second copy of "Has Fun" because we wore it out. The activities are fun for all of us, and provide what my kids need for sensory input. I have used quite a few of the activities at school parties and gotten the BEST feedback from the kids. Takes a few min and thinking to do them with a group, but it is a BLAST.

    One thing that really helped thank you was a crash pad. I took two flat twin sheets and sewed them together on 3 sides. I put every blanket, throw pillow, comforter, out of season sheet, etc... in our linen closet in it, and then he could jump on it, roll on it, squish it around to be comfy for tv watching or reading, almost anything. I did have to velcro the end shut and tell him that if he got inside it I would go and burn it up and it wouldn't exist anymore because that was one thing he wanted to do that did not seem safe. Not only could he disappear, but with as much was in it, he could have fallen asleep and possibly suffocated. As long as he was totally sure that if he did it then I would destroy it, he didn't do that. I didn't sew the end shut because I wanted to be able to use the items in it when needed. I just used it as storage for all the out of season stuff and rotated it as needed. I did get a bunch of throw pillows at our church thrift store, spend maybe ten bucks on thirty of them, and those are always in there unless one of the kids drags one out for some use.

    It is the most amazing thing. My mother had a COW, because "all your linens will get worn out" and "it looks so messy". Um, who cares? I got the linens at teh thrift store, and willg et more when needed. Messy? not a priority - esp when it kept thank you from mangling himself from jumping off of things with-o any padding. Also cut down on bills for bandages and supplies to handle sprains and bloody whatevers, cause he used hte crash pad and NOT the floor to jump onto.

    It was an idea from the book, and it iwll be a HUGE help.

    the brushing protocol is pretty much a miracle, in my opinion. A way to reprogram the brain WITHOUT medication? WOW - it was like a fantasy for us! MOST of thank you's current happiness/success at school would NOT have happened with-o a good private Occupational Therapist (OT) evaluation, brushing therapy, and working with his sensory issues. His only diagnosis's are sensory integration disorder and dysgraphia. At age 4 he could not spend an entire day in a class with kids. If we forced it he spent the entire weekend white as a sheet (NOT his normal coloring) walking around aimlessly and shaking like a leaf. He could NOT handle an entire church sermon. He and Jess would go help set up snacks when the organ started for communion.

    Now? he hates to miss a day of school, even when sick. Last year he made it all the way to Jan with-o missing a day. He almost NEVER gets that pale shaky thing going on. He can tell us when he is overwhelmed. He cannot always tell us where he hurts with-o us making him stop and THINK about it. Even a headache often registers as just overall not feeling good. Mostly both Jess and I can tell by looking at him when he isn't feeling good, and we maek him go through each part of his body and tell us if it hurts or not. He has to stop and focus, and then he CAN tell us, which he couldn't do even two years ago.

    There is a LOT of hope. It takes time, and making some adjustments in your expectations and in what your priorities are. But you CAN do this. Before you spend a lot of $$ on various things from Occupational Therapist (OT) stores, check other places. For fidgety items, check party stores. I spent a tenth of what the Occupational Therapist (OT) store wanted and got three times what i expected to get at the party store when looking for little balls, tiny clothespins, etc... for thank you to use.

    it helped J and Wiz also. They each have sensory issues, though not nearly to the level that thank you does. The various things we have and did, helped them too. Even with-o a diagnosis it helped them greatly. If you let difficult child lead the activities, he will show you exactly the type of sensory input he needs. As the Occupational Therapist (OT) went through things that would help thank you, we had more than 50% of them because they were things he liked doing. It was surprising to me, but the Occupational Therapist (OT) said that moms who let the kids do what they enjoy generally end up with a pretty good idea of the types of sensory input a kid needs.

    As for how much to use the vest - if it helps him stay calm, let him use it all he wants. In time he may need it less as he learns the benefits of not freaking out over things. If he doesn't? What is the harm? I know Marg has a daughter who wears corsets because the give the deep pressure she needs. Now they are part of her style, and they help her have a more normal life. So what? Who does it hurt if difficult child wears his weighted vest all the time as long as it is helping him? When he needs it less, he will not want it as much.

    Mostly it is adults who get in the way with questions of too much and not enough - kids just go with what feels good and is calming. in my opinion, and from what I have seen with my kids and other sp ed kids, the kids have it right.