For those with kids in OT

coasterqueen wrote: I'm not sure what I want here. I guess I need to vent, find out how others feel, etc. Megan is back in OT now that we *think* we have the insurance issue resolved. She goes every week for 45 minutes to an hour. I don't know what it is but every time we go I feel this overwhelming need to just bust into tears. I am not sure why. Sometimes I think it's because of the fact that she even has to deal with sensory issues. Sometimes I think it's because she'll do something for her therapist that no matter what we've done or tried we can't get her to do. Sometimes it's because I see her struggle when we are there, not sure what's going on and just struggle with the whole sensory issues. And sometimes I think it's because I wonder if we are ever going to be able to help her. Her OT tries to reassure me often that Megan will be ok. That we will get through this. I think a lot of this is overwhelming to me because we've tried for so long at home to do different things to help her with her sensory needs and now the OT is slowly giving us other things to try. I feel like our lives are chaos in a way when it comes to this.

I guess I just wonder if I'm alone. Why do I have this constant feeling of wanting to burst into tears? Dh is going to start trading off with me so I don't have to go every week. I WANT to go, but he thinks it's best if I give my mind a break from it every week.

Anyone?

ETA: I think I felt like balling today because her OT explained to me in more depth about how Megan's nervous system just didn't get the chance to "connect" because she was born a month early. A lot of people think being born just 4 weeks early is no big deal. For us, this sensory issue has been a huge thing and such a struggle for our family.

lovemy2 replied: I have no advice since I have no experience with it - at least not personally - I have a good friend who has a child with sensory issues - his are actually on an autism spectrum - I am not sure what Megan's issues are - she had a very hard time at first with all the OT, PT, special preschool, etc. but once she saw the progress her son made and the new things she could learn to help him - she started to look forward to going...

Hang in there Karen - it isn't easy but Megan needs you and you are a great Mommy who will help her with everything she needs

coasterqueen replied: Well we talked a bit more in depth about this today because one thing that has me on edge lately is whether Megan's sensory integration issues are related to autism. I was happy to find out that they are not. A lot of times when occupational therapy does not help an autistic child permanently. It doesn't "stick" with the autistic child. With sensory integration children OT works in time and changes the child permanently. She can already see that in Megan and has assured me she doesn't have autism.

Megan will have to go to Early Childhood Intervention through our school district as soon as she hits the age of 3 in March and then will NEED to go to preschool to help her with her sensory issues, but her OT is confident that she will be just like any other kid by the time she goes to kindergarten. That we'll have all the tools we need and she will know how to deal with her sensory issues by then.

So that made me feel better.

Thank you for your kind words, too. I needed that.

mysweetpeasWil&Wes replied: Oh Karen, I'm so sorry you are going through this. I don't have a kid in OT, but I can relate to a lot of what you expressed here because Wil is in ST and Wesley in PT. It's never easy to hear that your kid has a problem...and I certainly understand the frustration, and need to cry out loud, whenever we are in a session and my kids don't do what we have been practicing for the past five months. It's like all your hard work flys out the window. It's like you are constantly being judged by others, and your therapist...As if no matter what you do, it's never enough for your kid. And DH doesn't really get it, because I'm the only one who does the sessions with them. He comes home and sees me frustrated and just goes on with his business. Or he says something to try and cheer me up like, "Rae, he will get it, relax"...RELAX? Easy for you to say when you don't have to do the work here. My folks don't get it either...My mom always comments that it's sorta my fault, as if I'm not DOING enough. And my ILs think I'm nuts to even be doing it at all because they are in the mindset of "kids will do things on their own time"...the list goes on. I was actually just going to post about how frustrated I am with my friend's negative comments about putting my kids through therapy. They always roll their eyes or make a comment like "oh, he is FINE, I can't believe you are doing that. There is no need. He will catch up." As if they know. No one knows exactly how it feels until you've been there. So please don't try and tell me that I'm doing the wrong thing by getting my child help. Grrr.

Anyhow, you are not alone. You are doing the right thing, hun. Believe it. She will be fine. I think it is a great idea to have your DH trade off going to the sessions. You deserve a break. It IS overwhelming. I often feel helpless and literally sick to my stomach every time we have an ST or PT session. But I just have to have faith that I'm doing the right thing and my kids will benefit.

coasterqueen replied:
Oh Rae. I am sitting here in my desk in tears. Thank you. It is so nice to know someone understands what you're going through. I, too, understand the issue with Dh and others. Dh is trying really hard to understand and to believe all of this. He knows Megan has problems, but sensory integration dysfunction is so new in the field that he's just not quite sure, kwim? And others just think she's being a normal 2.5 year old and have NO clue what she's like all the time. My sitter used to feel that way, but has been seeing these issues with Megan for some time and even she can't deal with Megan like she can with other children.

Again, thank you. I really needed this today.

moped replied:

coasterqueen replied: Rae - one thing I've said to DH when we've talked about whether Megan will "catch up" with things is this. I tell him that her therapist guarantees me that she won't. That her issues are something that she needs tools to figure out how to deal with it the rest of her life. Tools we need to help her. We could take the chance that maybe when she hits preschool or K that she'll "catch up" and "grow out of it", but if we do take the chance and she doesn't, she'll be in special classes. I find that much more painful to swallow and deal with than going through OT right now. KWIM? I'd just die if I took a chance and she ended up in special classes because I didn't take the opportunities in front of me right now. KWIM? So maybe explain it that way to your husband. Dh understood a bit better and agreed with me after explaining it that way. He doesn't want to take the chance of her being in special classes if she doesn't need to be, either.

moped replied: Karen,
The therapist says she will not catch up at all? In what areas is she behind? I am just curious, I don't know much about it but it is interesting to me.

mysweetpeasWil&Wes replied:
I'm glad I can be of some help. All of this has been weighing on my mind lately too. There is a lot of guilt involved on my end, but like you said, I would die too if I found out later that one of the boys had to be in special classes because I didn't take a chance and take the opportunities in front of me. I totally get what you are saying. That's why when my friends make comments like "oh don't worry, he will catch up on his own." I just want to shout "HOW do you know that for sure??? Please explain." I don't see any harm in getting help NOW if it's available. Yeah, Wil may catch up with his speech in less than a year, but what if I hadn't done the ST and he would be way behind? What then? It's not like therapy is going to "hurt" them, it's only a win win in my eyes.

Thanks for these tips. DH is actually on the same page as me, but he often forgets all the hard work I have to go through with these kids. Although his optimism is sweet, it doesn't always make the worry go away for me.

Anyhow, just so you know, Wil is in ECE right now and loves it. I actually just picked him up from preschool and he was working with the ST in a special office. I walked in before he could see me, so I got to hear him talking with her. And I was just about in tears. He was doing so well, answering questions and using three word sentences. A lot further ahead then he was just a month ago, so I know that the ECE is working! It will be great for Megan too, just you wait.

Wil's ST had mentioned the possibility of SID with Wil. I haven't had him tested yet, but I recently read "The Out of Sync Child"...Have you read it? It had a lot of good information on SID and others like autism, ADHD, etc.

coasterqueen replied: I'm glad he's doing well in ECE! That's great. I am set up to talk with our ECI in December along with the OT. They are going to do some early speech testing to see if she needs to see someone special for her forward tongue thrust movement. She already was tested for it and they think she will catch up in that area, but wants to test her again in December. If her OT thinks we need to address that then, we will.

I have not read that book. I have read other sensory books, but my OT today demanded I read that one along with using the workbook that you can buy. Another book she wants me to read is "Sensational Kids" by Lucy Jane Miller. She says it's a great read too. So if you haven't read that one, it's recommended.

coasterqueen replied:
Jen,

Catch up is probably the wrong word to use with SID. It's more or less when a child has SID, often times they learn behaviors to handle their sensory issues. Those behaviors are often times not good ones - it's a mechanism to help them live in "their world" so-to-speak. If we do not deal with the SID now, then she is going to have a hard time in school - a struggle. This will either mean that she'll have to be in special classes because "normal" teachers will not be able to handle a sensory kid, Megan will get into lots of trouble for her behaviors, and most likely fall very behind in learning.

Megan cannot move from one activity to the next without total chaos. She goes into total meltdown mode. For instance, in her weekend art class when we walk in the door all the kids sit at one big table and work on one main art project. After they are finished they can go to other projects throughout the room. What happens for Megan is she goes into sensory overload because there is too much chaos going on in the room and she goes into a corner and curls up into a ball and sucks her thumb or she because destructive throwing a huge tantrum and destroys the room. Then when most of the other kids are finished with the project, then she'll come to the table and sit down and do the project. What her therapist says is that she just can't handle all those kids in one area - there is too much chaos going on. This will happen when she gets into school and this will be a problem.

IF we can get the tools needed to help her transition during these sensory overloads then she'll be able to deal with school. It's really hard to explain without seeing a child with these issues. Also a lot of times it sounds like they are just being kids of their age, but a lot of times kids with sensory integration issues tend to use these "normal age" behaviors as ways to deal with their environment - these aren't issues that go away when they turn the next age, the next age, etc. So this is why they aren't "normal age" behaviors.

Megan, because of her sensory issues, she's on the spectrum of needing DEEP DEEP pressure. It's amazing watching the therapist take a hard bristle brush and brush the daylights out of Megan's legs and for some or most this would either hurt or drive one insane. For Megan this calms her into almost a sleep state.

I could go on with these explanations. Right now we, as her parents, can try to help her when she can't deal with her sensory issues, but when she starts school we won't be there to do that. The OT is helping her deal when she's not there with us. For Megan it has to do with an underdeveloped nervous system. I'm not quite in understanding of all of this yet, except we have heard that alot since birth. It's always been explained to us that her system didn't get the time it needed to develop properly and therefore has problems "connecting" inside her body. I'm still trying very hard to understand all this stuff as it is pretty confusing.

Jamison'smama replied: I want to respond and when Jamison's playdate ends and I can steal some time--I will post

moped replied: SO Karen, is it almost like she gets overstimulated?

mysweetpeasWil&Wes replied: I think you described it really well Karen.

mummy2girls replied: Karen I feel the same way with all of jennas needs. she sees a OT, PT and SP. And i know they are helping and they keep telling me she will catch up and be ok but i do find myself at night crying because i feel im alone in this all. That I have tried everything and they can do better than me. I think it comes with the territory. Plus us mom do everything for our kids and when we are told there is something"wrong" with them and they are not all perfect it hurts!

((HUGS))) Megan will be ok! Trading off sounds like a good idea. that way it gives you the break.

mummy2girls replied:
Thats what jenna has been in and because she has been doing it every day in this program rather once a week before being enrolled she has improved big time!!!! They tell me that they feel she will get ahead of her delays and once she hits kindergarten be ready and that she will be given the tools to deal with all her issues.

Bamamom replied: Wow guys - I don't really know what to say except that you guys are exceptional moms. What devotion to really investigate what will help your child the most and then go out and make sure they get the help they need. So many parents would just overlook these things or say they will outgrow them on their own and then the kid is stuck trying to deal with it.

I was in ST and I am so thankful to my mom for driving 45 mins twice a week. We had NO money and they found a way to pay for it. All that to say that one day your kids will thank you.

My thoughts and prayers are with you and your kids.

Jamison'smama replied: I just wanted to write to say I feel and have felt a lot of the same feelings. You know, we look so hard to find explanations for the way things are, and then we we get them and the child has an actual diagnosis, we then have to work through the pain of the label knowing what it means and what it will entail. When I first wondered about Jamison, it was because of her excessive chewing and her requirement of lots of physical contact, when I read up and realized SI was a possible reason, I had her evaluated and wow, was I surprised. She had labels, words were used that I had to research---proprioceptive, modulation, sensory diet etc. It was confusing and frustrating. It is like OT is a completely foreign language. I grieved for her but now that we have done this for quite some time, I have a lot more peace with it. I know that many many kids need this therapy that aren't getting it, it is more common than people realize and my child is fortunate to be getting these services. I know she'll struggle with this, I am seeing it in her kindergarten class already. The teacher informed me that Jamison fidgets with stuff when in circle time---her headbands, rubber bands, ties on her clothes etc. I then had to figure out how to delicately educate her on sensory issues and that Jamison is coping--she requires more sensory input than other kids so she fidgets with stuff to enable her to sit. The teacher (a 20 year veteran) was completely surprised and surprisingly supportive. She then talked about other kids in the class who could benefit from holding an object (a squishy ball etc,) it is tough that this is so new and we have to be such advocates for our kids.

Has your therapist mentioned listening therapy? It is another interesting OT tool but yet another thing to do.

Hang in there and remember, no matter what other people (and there are some in my life too) say, we are doing what we feel we need to do to give our kids the best possible future!

ZandersMama replied: I know exactly where you are. I get from alot of people that i should back off from the specialists adn just let Zavier catch up on his own. It frustrates me ssssssooooooooooo much because he doesnt have the tools to catch up on his own without help. People just dont understand unless they are in the situation.

I got alot of slack for putting Zavier in physiotherapy , people saying it wont help. Well after 5 weeks of therapy, he crawled across the floor two days ago and reset Zanders video game.

Alot of people dont undertand what it is like to have these special wonderful children. Thats why God gave them to us. we CAN handle it and be there and advocate for our children because we have to.

Right now we have Early intervention, physio, his hearing specialist, plus the regular set of peds that see him.

YOu are an awsome mom. Try not to let it get you down. We are the only ones our kids can count on to help them. Don't mind what others say to you about taking her, you know you are helping her.

coasterqueen replied: Brenda,

She has not mentioned listening therapy. That sounds interesting. I'm not even sure what that is. Unfortunately because of all the insurance issues Megan had to be reevaluated and her therapist is trying to figure out what is the best route for us to go. She said it will take several weeks before she really gets a feel for Megan and what we can do as far as her "sensory diet". The insurance company is fighting us again (we got a letter last night) and I talked to the therapist and she said she will do everything in her power to get it covered because Megan should have been here a year ago when we first tried. I think sometimes what pains me more is someone else sees what I've seen and in a way I think her therapist sees more than I do and it's comforting on one hand and on another it just makes me cry that we didn't do it last year (no matter what the cost was).

I fear Megan will have issues in school, but I'm trying to be optomistic about it and hope that the tools we are given will help. I also think getting Megan into the school system early through Early Childhood Intervention, then Pre-K that by the time we get to Kindy the teachers/school will know what we are dealing with and will take that into consideration. KWIM? I think it could make a world of difference for us.

boyohboyohboy replied: I agree with what everyone else has said, there is nothing wrong with getting your child what she needs. I also have had days that I spent in tears just wondering, "why my baby". but most days are pretty good. I dont see anything wrong with the tears once in awhile, you love your child and will do what ever it takes for her to have the best life possible. and you might not ever get the degree of thanks you deserve for the time you spend worrying, the effort you put in, and being the one who does the research, and makes sure the people working with your child are doing their best, and she is getting the best, but seeing her one day thriving and happy, will be worth it.

I do think you will like the jenny book, karen, it really talks about just these kinds of feelings.

Jamison'smama replied: Karen, listening therapy is really fascinating. It is more of the OT "voodoo" that works and I can't quite get my mind around how. I consider myself an educated person and this whole field is so foreign. Anyway, here is a link to the Therapeutic Listening. Vitallinks.net

momofone replied: I did some reading and found that magnesium and omega -3 's are great for sensory issues. Foods high in magnesium are sunflower seeds spinach and soy. Omega -3 would be tunafish and flaxseed oil in capsules. HTH

coasterqueen replied:
Thank you. I am going to check into that for sure.

momofone replied: I just wanted to add that smart balance butter has one that contains Flax oil . Just good for the omega 3 's. I just like to do alot of reading on natural remedies thats what I google natural remedies for .....

coasterqueen replied:
We already use that butter

lovemy2 replied:
This is EXACTLY what my GFs son has (one of his issues - there are more and most that go deeper than Megan's but) one thing they looked into and found out what the FOOD ALLERGIES her son had to things she was feeding him ALL the time- eggs, chicken, and some other very well known and used foods kids LOVE - it was amazing what the change in diet did for her son - it calmed him down, made his meltdowns less intense and has made him much more able to focus - I don't know if this is something you have looked into for Megan and I don't think your post was looking for answers for her issues but just thought I would throw it out there -

It is always amazing to me how one thing is connected to the other but sometimes its the last thing you would think to look at

coasterqueen replied:
We've done the dairy free diet, it was when she was little and had sensory issues, but it didn't help. We were doing it for reflux as well. It didn't help. We are looking into going gluten free wondering if that might help, though. There are also certain food dyes that people swear after they've cut them out that their children's moods changed so we are looking into that as well.

My2Beauties replied: Karen I just wanted to give you a I honestly don't understand a lot about SID but it sounds like you've went above and beyond the call of duty to help your child. Most parents would say oh that must be normal and think oh they'll grow out of it etc...I commend you for being such a wonderful mom!!

coasterqueen replied:
Jen,

I am sorry I didn't see this before. Yes, it's basically in some cases an over-stimulation. Some are under-stimulated.

Here's a definition of SID that is pretty clear: "Sensory Integration Dysfunction is the inefficient neurological processing of information received through the senses, causing problems with learning, development, and behavior. These children are over-sensitive or under-sensitive dealing in touch, taste, smell, sound, or sight. For example, some of these children crave fast and spinning movement, such as swinging, rocking, twirling, and riding the merry-go-round- without getting dizzy. These children may move constantly, fidget, enjoy getting into upside down positions and be a daredevil. These children may become overexcited when there is too much to look at words, toys, or other children. They may cover their eyes, have poor eye contact, be inattentive when drawing or doing desk work, or overreact to bright light. These children often act out in an attempt to cope with their inability to process sensory information such as acting out in crowded or loud places."

The problem is you can't deal with an SI kid the same as you would with a kid who does not have SI. With a kid who does not have SI you can take them out of the situation, end of story. With an SI kid every situation seems to be too much.