The Abby Saga

My thoughts are always on this little girl and how I can best help her. I asked Tyler the other day what it was he thought about all day long. He told me, "Well, I guess whatever it is I'm working on." I said, "I sure wish I had a man's brain." Tyler laughed really hard and said that that was a quote for the blog. But it's true! No matter what I'm doing I have a million things running through my head ~ things I've got to get done, things I really want to do that I never make time for, what I said to so and so and if it sounded ok, why the kids are acting a certain way and how I could have handled them better, what we're having for dinner tonight and the next night and the next night, and the list goes on. I know this is generally true for most woman but seriously - it is so overwhelming and so exhausting!! And most of the time somewhere in the back of my mind I am thinking about Abby.

Why does she act the way she does?!?!?

What a year this has been! And it's not even over. Lots of doctors, lots of medicines, lots of stuff. It's all turned out pretty good though. Except now most of her doctors are in agreeance that Abby should see a developmental specialist for possible sensory processing disorder. I'm just not sure how I feel about that. A disorder? On top of the autoimmune disease? More therapies? More medication? NO!!

It kind of makes sense though (andy hey - it would mean I'm not a totaly failure in this parenting business). Abby has been a challenging child. Always very independent; always very active. The kid couldn't sit still at 2 months old. She had to be out of her car seat seeing what was going on around her. She was so smart. So fun! She required a ton of attention and I gave her a ton of attention because I could. Then I had twins...

I honestly don't think Abby has ever recovered. Sometimes it is like she is stuck in the life of a 2 or 3 year old. Lots of baby talk. Lots of fits when she doesn't get her way. Almost a refusal to obey what mommy and daddy ask of her. She is in a phase right now where she says, "I'm NOT going to and you can't make me" (which is really fun when your friend has just babysat for you and you can't get your daughter off her couch!)

Abby hates having her hair combed. Abby hates having her teeth brushed. Abby will scream bloody murder if you try and cut her nails. If she does any of these things herself, if she is control, it is ok. If you try to help her it really bothers her. It hurts her.

Abby has been getting blood drawn, IVs, and shots for the past 7 months. I would think one would kind of get used to these things but for Abby it almost gets worse everytime. She gets so upset and so anxious when she has to get poked that it is hard for them to get the needle in. We have to almost hold her down at home to give her her shot.

Abby does not like to hold hands. Abby does not like to be hugged. As a baby I couldn't rock her. She pulls away from touch - especially my touch. Yeah, it makes me feel really great. If she does show affection it is almost too much - hugs too tight, jumps on you, etc.

Abby has a hard time following directions. For example the other day Andy came down stairs all ready for school - bed made, clothes on, on his way to get his shoes. I said, "Wow Andy, I didn't even have to ask you to get ready and you just did it." He said, "Well mom, this is what we do every day." EXACTLY!! This is what we do everyday. But Abby forgets. I will go up and say, "Ok Abs. It's time to get ready for school. I need you to...." and list the things I need her to do. 15 mins later she's still not down. I go up and check on her and she got distracted on the way to the bathroom and is now playing still in her nightgown (she's usually distracted one or both of her brothers by now also). "Abby - what are you supposed to be doing?" "I don't know." "You're supposed to be getting ready for school!" "Oh...what do I need to do again?" SERIOUSLY?!? We've only been getting ready for the day for 7 years! Now this does not happen everyday and I've learned ways to motivate her to move faster (like "I'm going to put a movie on in 5 minutes. Those who are ready can watch it." She moves really fast then!) but something to this affect happens often enough that it is an issue whether it is getting ready for bed, homework time (homework has to be one on one or nothing gets accomplished), or just general things I ask her to do. Now she seems to do fine at school. Her teacher in 1st grade said that she felf Abby got distracted a little more than she would normally expect but that it wasn't a huge issue. At home it is a huge issue! She forgets things a lot!

Abby is loud!! She talks loud and she plays really rough with her brothers. Ben too. I'm forever reminding her to be gentle with him to no avail. However if anyone else talks loud or sings or acts silly around her it really bothers her. She says she can't concentrate. She gets very annoyed but of course this make her brothers sing lounder or bother her more and it just goes from there. The other day before school Abby needed to sit down and stop playing for the few minutes we had left before leaving for school because she shook Alex hard and made him cry. When I talked to her about it she said, "Alex kept singing this song (and he wasn't doing it to bug her) and it got into my ears and made my head hurt and then went down into my tummy and made me tummy hurt. I asked him to stop singing and he said he had that song in his head so I had to shake it out of him." This whole singing incidence made her so upset that she refused to get out of the car at school. I had to push from my end, the teacher on duty had to pull from her end, and I had to leave her on the curb crying. All because Alex sang a song.

I feel Abby has a hard time socially. She's just a little...weird, different, quirky. Which isn't necessarily bad. But still...this is a conversation we had today. Abby was telling her Grandma Hall that one morning they were one of the first kids at school so she had a long time to sit in her line before school started. I asked her why she didn't go play with the kids. She said she just didn't want to. I asked her if it was because of her legs. She said, "No, I just don't have many friends." Andy said, "Well just go make some!" Abby said, "Even if I did I'd still just sit in my line instead of playing." I said, "How come?" She said, "Because that is what I want to do." Abby is going to do what she wants to do and it doesn't really matter how others feel about it. When you play with Abby you have to play exactly how Abby wants to play and you have to say exactly what she wants you to say or else she storms off in a huff and isn't playing anymore. She hasn't quite figured out the give and take of friendship. Also, her favorite thing to play is baby - where she is the baby. It usually involves her parents dying and she is left in the woods and whoever she is playing with her has to find her and take care of her. Well, her 7 and 8 year old friends that come over really don't want to play baby anymore; her brothers are tried of playing baby with her!; and then of course off Abby goes to her room and the friends are left to play with the boys. Abby gets along great with Sophia (the little girl I used to babysit) - but she's 2. Abby will talk to you when she wants to talk to you. If you talk to her she will respond if she feels like responding. We went about 4 months in kindergarten where she ignored everything I said. Getting her to tell me about her day resulted in 20 minutes of crying. I finally stopped asking. Friends at school will say hi to her and she won't respond, or will respond so quietly that they can't hear. She says she is shy which I believe she is to an extent but still... you have to try. Is this something that will improve as she gets older and friends become more important to her? Or is she going to be a loner forever who gets attracted to the wrong crowd and ends up cutting herself and having a polygamist boyfriend? (Had to mention it R -it's always on my mind!! My friend's sister exhibited a lot of the same traits as Abby when she was younger and these are some of the situations she has been in recently. Yipee.).

And then there is the whole likcing her fingers/playing with her spit/snot thing. She says she just has to do it. So not ok.

I don't know. It just seems that we are constantly on Abby's case about something. I feel awful about it. Abby's rheumotologist says that most likely we have some family members with compulsive tendencies (um, yep) so she has a predisposition to these types of behaviors and then stress has brought them out. I have a cousin whose son has sensory processing disorder and he said Abby's behavior sounds very similar to what his son was experiencing before he was treated through occupational therapy. I've talked to people in my ward who agree Abby has some issues. Abby took a sensory profiling test in which she scored a definate SPD in the attention/distractability catergory, a probable in auditory processing, touch procssing, multi-senosry processing, and low endurance/tone, and then scored typical in 15 other categories. So if she has something it definately isn't extreme; just enough to drive her mother absolutely BONKERS!

I really started worrying ab0ut her this time last year. She went a week straight where every day she came home with a piece of clothing that she had cut with scissors. At the end of the week I made her sit down and sew up everything she had cut. In the middle of this she got angry and said, "The reason I cut my clothes is because you never listen to me and that makes me mad so I cut my clothes to make you mad." Wow! Ok, I feel like I am a pretty good mom most of the time and definatly give my daughter as much attention as I can. I thought - we need help! I talked to the school counselor. He said it was probably due to the baby being born. I looked into ADD, I looked into some form of autism, but then she was diagnosed with her dermatomyositis. Oh, ok, that explains everything. She's right - we weren't listening to her. She was hurting. No wonder she complains of tummy aches all the time. No wonder she is so cranky. She doesn't feel good.

But now she is getting better. Her doctor is so impressed with the improvements she has made. They have started decreasing her steriod medication that she is on which they usually don't do until after a year of treatment. It's only been 7 months! She hasn't had any other problems that could occur because of this (trouble with eyes, brittle bones, skin trouble, ulcers, etc.). She does awesome in physical therapy and only has to go about every month and a half. She had a colonoscopy done that showed a little inflamation that could be contributing to tummy aches but not enough to need any intervention. She has been in counseling for months now (which if anything has helped me more than her). But her behavior hasn't changed. Why is she still so unhappy?

How much does the medication play a roll in her behavior? Honestly it may have ramped it up some but she behaves pretty much the same she always has. How much is this just her personality? Goodness I would hate to be trying to change her if this is just the way she is. If anything I'm the one who needs help in dealing with her strong personality and not squashing it flat. Tyler thinks she is a normal 7 year old girl who likes to push her parents buttons. He worries that the doctors are going to diagnose her with something just because doctors need patients to make money. Scary thought! Will she mature as she gets older? How is a 7 year old really suppsed to act? Do most 7 year olds forget to use their silverware before dinner or forget that we need to pray before we eat or have a melt down when mommy asks her to please sit up and try to be reverent at church? I don't know! I've never had a 7 year old before. All I know is that Andy and Alex, who are 2 years younger, act a whole lot more mature than she does. But you aren't supposed to compare your kids. Kids are different. Ai-yi-yi!!

All I know is that I love her so much and I worry she doesn't feel that. I want her to be happy but how can she be happy when she is crying, throwing a fit, or in trouble for what seems like the majority of the time.

Basically this post was for me and if you are still here thanks for reading. Maybe my head will be a little clearer now that I've jotted this all down. Abby meets with her rheumotologist again on August 17, her pediatric eye specialist on Aug. 24, her GI doctor on Augsut 28th, her counselor on Aug. 29th and then we do have an appointment set up with the deveopmental specialist on September 15th. Hopefully we will be able to figure things out soon.

Abby, we are trying so hard to help you feel better. Do you know that? We love you so much and are thankful you are our daughter. You are so imaginative and creative and you do try so hard to be good. You are so beautiful and you will start looking like yourself again soon - I promise! Please be happy!!

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Hey Carrie,
         Thank you!  I've decided that I have wonderful friends who 
have called, texted, or emailed me this week about work!  The first 
week went great!  My co-teacher has awesome classroom management and 
so I'm doing my best to keep up and follow through.  That makes me a 
little nervous for when I'm on my own but I'll figure it out.  Sophia 
did okay at Darcey's.  She had an accident one day, tried to refuse 
nap/quiet time on Monday (but eventually did sleep), threw fits a 
couple of mornings either at home or when I was dropping her off, but 
overall when she was there was good.  :)  Today, Darcey said Soph 
didn't cry that much (Ryan and I were like great, she's a crier).  
We're still working on the naps at home (since I haven't been home 
that hasn't happened).  Now that I'm back on my regular schedule that 
will get under way.  Thanks for asking!
          I hope things are going well for you!  I saw your blog and I 
tried to comment with the Abby saga but it didn't work right the first 
time so I left it.  I was just going to say that I love you and your 
family and I know you are doing the best you can with Abby.  That's 
what the Lord has asked of us (although I know it's still frustrating 
when you're doing your best and not getting the results you want).
          I don't think I'll be ready to get together this week.  
After working all last week I just want to be home (and need to be to 
clean, unfortunately). Monday and Tuesday but I would love to get 
together the following week sometime.  I know your Mom's moving out 
here soon so I don't know if that conflicts.  Just let me know.
          Thank you again for being so sweet and thinking about me.  
Talk to you soon!
-Rachel

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Hey! Well, I just decided not to say anything. I feel weird about it. I tried to find him on Facebook with no luck. I did find his Mom and Jill and Leanne so I'm friends with them on there but no Stephen. Maybe later. :) I'm sure they mentioned to him that they found me so he knows I'm out there. :) 

Ok, so I read your blog about Abby a when you posted it but we've been a little busy and we did a 2 night resort/spa thing for our anniversary so now I am finally responding to it. I didn't know you were having such a rough time with Abby (other than the obvious). It must be tough to have to deal with all the medical stuff alone and to add behavioral stuff to that must be especially hard. I'm certainly no expert at any of this stuff and I only have 2 young kids so not much experience either. :) I do think a lot of kids have little quirky things that seem kinda OCDish and then they grow out of it so maybe some of it is just that. Some things seem a little extreme but again... I'm no expert. :) I read some of the comments from your other friends and agree with what they've said. I think a 2nd opinion is a good idea (my mom had us all diagnosed with ADD as soon as she heard about it when I think we just needed some more Mom attention). So, finding out from another doctor would be a good idea just to make sure. I also agree with the friend that said some quality time with just her is a good idea. She might just need that extra oomph to feel loved. Some kids need it more than others. I've never seen you as a mom (so sad, I know!) but I can't imagine you being anything but the best Mom on the planet. You (and Geoff I must add) are by far the kindest most caring and compassionate people I have ever met in my life... and I've met A LOT of people!! I truly think you are one of the only people that could have such a unique child and love her so much and sincerely care about her well being and want to help her. Plus, you are so patient. I have to add that you were my truest friend all through high school and if it weren't for your example and friendship I would have turned out a lot worse than I did. You didn't even know half the crap I was dealing with at home and yet you got me through it. You have no idea what you did for me back then. I have no doubt that you are the best person for Abby and that she will be just fine. She was sent to you for a reason. Just follow your instincts and you'll do the right thing. I think that's all I can think of. :) Just hang in there and keep doing what you're doing. Love ya!!

Christy

P.S. I'm sad that your parents left because that's less of a chance that you and I would be in CA the same weekend! That's awesome that they are closer to you though. I'm sure your Mom will love that!! 

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Carrie-

I just heard about Abby and caught up on your blog, I am sorry to hear how difficult and worrisome things have been.  As great as kids are they are also a great source of worry and frustration, and because we love them so much and want to help them it can compound our worry and frustration.  I have kids who struggle with behavior and focus issues and have often worried how much is normal behavior and if it might be something else.  I think it is probably worth meeting with the developmental specialist and seeing what they say…From what you explained, I would say it is probably a combination of normal behavior and something more, the trick becomes trying to figure out what is what and what to call them on and what to work with them on.  Jackson, almost 7, has in the last several months gone from being one of those kids  who gets up and gets everything done, to getting distracted constantly, he will go to his room to make his bed, get dressed, etc., and I will check on him 15 minutes later, and none of it will be done and he can’t remember what he is supposed to be doing.  Devan has always had trouble staying focused, and he seems to really push my buttons, a lot!  I just keep trying new and different things, but it can be exhausting and frustrating when nothing seems to work.  I have a friend who has a son who has several challenges, including sensory integration issues, disgraphia, dyslexia, and is also very gifted in many ways.  She homeschools because he would have such a hard time at school, but she has had him in therapy with a great occupational therapist and he does so much better than he used to.  He has not only become less sensitive to certain things, but he is learning great coping skills so that he can be around others and do well.  He is becoming more aware of his triggers and what he need to do to stay in control and have positive behavior.   Abby doesn’t sound like she has nearly the difficulty he did.  Another thing that occurred to me is that because she has had  to go through so many medical procedures this last year, and a lot of that she probably feels like she has had no control over, she may to some extent be exerting control where she can, and nothing controls a family like negative behavior.  I know you will keep loving her and working with her…gather as much information as you can then do what feels right, you are her mother and will know what to do.

We love you guys!

Alicia

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Hi Ranee,

I am so frustrated.  We had our appointment with the developmental specialist on Tuesday.  We ended up going to the Jordan Developmental Center.  It was so not what I expected. 

I've been reading The Out of Sync Child.  Lovin' it!  Abby definately is not an extremem case of SPD but several things in the book sound similar to Abby and one section in particular described her perfectly.  Plus I've talked to you about SPD and to my cousin who's boy has SPD.  I've talked to Abby's physical therapist who had me talk to the OT in the office who had Abby take a sensory profile and said she would probably benifit from20some occupational therapy.  Ok, so I'm all geared up when I go in there to explain what has been going on and how I've been reading this book and have seen some correlations.  Well, the first thing Dr. Jordan says to me is that sensory processing disorder is not a real thing.  It is just something occupational therapists have made up and only they know about it.  What!?!  I was totally floored and got very flustered.  I feel like he didn't let us explain half the things we needed to and the ones we tried didn't come out right.  I broke down crying in the middle of the appointment and basically it was all very embarrassing.

He said that Abby acts the way she does because she can.  The consequences that she gets still give her the attention that she wants and so she keeps doing them.  (He sounded like my mother).  Inorder for the behaviors to go away we need to pick the few that are the biggest issues and when she does those we need to lock her in an empty room for a half hour to an hour and then come back to see him in a month.

So now what?  Why if SPD isn't "a real thing" did Abby's counselor suggest we look into having her screened for it?  Why are kids diagnosed with it?  Why are their web sites about it and books about it?  Why would some of the things I've read about it fit Abby so well.

Now this totally confirms Tyler's theory that doctors will make things up just to get money.  And now what if we go to another doctor (who I don't know who we'd go to because Dr. Jordan was about the only one who would take her) and they say she does have SPD.  Who do we believe?  Why would doctors say 2 different things?  Can doctors just have opinions on things like this?

Anyway, this was so frustrating to me as we'd been waiting months for this appointment and I'd been studying about it and fasting and praying so hard.  Since I'd been doing those things is what Dr. Jordan said the right answer and I'm just upset because it's not what I wanted to hear.  Or since I don't feel right about it is this not the right answer?  Where do we go from here?

I'd just like to get your opinion as your kind of experienced in all of this kind of stuff.  I was just so excited to get some answers and if locking her in her room is the answer then great (we've tried it before - she tore some of her wallpaper off and found a pe n and scribbled in lots of places - we didn't try it again).  But what if there is something more?  Thanks for letting me vent!!

Carrie Ü

Carrie~

  First off, let me just say that I am sorry your appointment went to so terribly wrong!  I have a friend who has 2 boys that have Autism and she has been to Dr. Jordan before and didn't like him.  I almost took Jace to see him until she said that and then I found out I was able to get him in with Dr. Ellis.  I took D.J., my previous foster son, to see Dr. Melmed one time, and I got the same kind of feeling about him...that he was only in it for the money and I left feeling confused as to what D.J.'s exact issues were, if any.  He told us he wanted D.J. to see Dr. Bilog (not even himself) in 3 months, which made me totally mad because I didn't see how anything was going to get better for D.J. in 3 mos, without some input from the doctor as to things we should be doing with him during that 3 month period.  EXTREMELY FRUSTRATING!!!  It sounds to me like Dr. Jordan is trying to tell you that Abby's just a "brat" and that she's using this as an attention ploy.  I am here to tell you that's not true!  The conclusion I had to come to with my kids is this:  "Why would my child choose to seek attention in these ways, when there are so many less strenuous and more fun ways to get my attention???  Abby is not hurting for attention!  You and Tyler give her tons of love and attention at home, I have no doubt about that! You know Abby better than anyone does!   It makes complete sense to me, that Heavenly Father sent us here with all different kinds of challenges and struggles with our physical bodies.  You and I even seek or avoid our own sensory experiences and we even struggle to process certain things the way others do.  That's the whole meaning of why some things (like an electric toothbrush or the sound of nails on a chalk board) drive us crazy and other things are calming to us (like having someone braid our hair or swinging in a tire swing).  That also explains why some people LOVE roller coasters...because of the rush they get from it!  It's an extreme sensory experience!  The best thing I can tell you is that you as Abby's mother can receive inspiration for her (Dad's can receive this too, for their kids, but mom's are better at it.) :0)     Gannon has lots of sensory processing issues- LOTS!  He's never taken a sensory profile, but we just know he struggles with lots of things.  I do deep pressure and joint compression with him (probably not as much as he would like), and he has a chewie (I can tell you more about those things if you want) and we re-direct a lot of behaviors .  Zoie's impulsivity is partly related to sensory issues.  Zoie has a hard time processing where she is in reference to things around her.  She has a hard time sitting for extended lengths of time because she can't feel the chair underneath her.  This is why Primary is hard for her.  Lynzie runs into things, to feel them and to get a reference for where she is in relation to things around her.  She craves the feeling of bumping into things and laughs every time she does it and will then say "Ow!" later.  Talk about a delayed reaction!  We continue to treat our kids ourselves, the best we can.  Lots of people think the sensory processing stuff is "Hokey".  I did too, before I started learning more about it!  I have come to the conclusion that our bodies are more amazing than we give them credit for.  The way we use the information that we get from touch (tactile), sight, sound, smell, taste, our vestibular system (inner-ear...related to spinning, being upside down, etc.), and proprioceptive input (pressure, etc.), varies from person to person.  We all perceive things in a different way!  We all have things that bug us!  For me, you won't ever catch me eating clams or oysters...not just because of the taste but also because they are chewy and slimy...YUCK! Other people LOVE it!  It also drives me crazy to listen to squeeky shoes walking by on someone's feet ...literally makes me feel like chewing on something...crazy, I know!  LOL :0)  I guess the point I am trying to make is that if I were you I would start out by paying close attention to what Abby says or does and give her the benefit of the doubt, that she is having issues with sensory processing.  I would recommend doing some deep pressure and joint compression with her and if she wants or needs a chewie tube, try that too.  You will probably be amazed as to how these things can help her.  I would be happy to show you how to do these things if you want to, and no one needs to know that you and I even discussed this!  You can do these things with her, in the privacy of your own home where no one needs to know about it, and then see how it helps her.  I would even recommend not telling her teacher at school, and just see if her teacher notices the difference and says something to you about it!  It sounds to me, like Dr. Jordan is only interested in treating "extreme cases" because there's probably more money for him that way...ie. prescribed meds, longer treatment plans, more appointments, etc.  He probably saw that Abby's case is not as extreme as he would like it to be, so  he gave you the brush off.  Second opinions are always a good thing, in my opinion!  Compare what 2 different doctors say, and how they treat you about it all, and then pray about both of those things and make your decision.  It does strik e me as odd, that Dr. Jordan even wants to see Abby again, if he's so sure that MOST of her issues are just ploys for attention.  That, to me, sounds like just money in his pocket.  As for the locking in the room thing, that's hogwash in my opinion.  Abby absolutely needs to behave!  If she needs some time in her room every now and then, that's okay, but be careful with punishing her for things she is sincerely struggling with.  That's why I think some deep pressure, etc. would be good for Abby.  After giving her some treatment like that, you might be able to get a better idea of which issues are real problems for Abby and which are attention-seeking or poor behaviors.  I always try to remember how important it is to error on the side of believing my kids have real issues, rather than finding out later that they really did have issues that I ignored.  I hope that helps, a bit!  There are lots of people in my life who think that my kiddo's issues are all in my head and that all of this in nonsense.  It's certainly not fun to be treated that way, but it does get easier!  When you see improvements in your child, it makes it all worth it...and I have learned that Heavenly Father made the mother of my children for lots of reasons!  One of those reasons is that I have the ability to think outside the box and sometimes that's all our kiddo's need!  Let me know if you want to know more about deep pressure, joint compression20and chewie's!  Love ya'!  Call me and maybe we can do lunch sometime!

Ranee   

Ranee Hansen :0)
480-987-6052
In God We Trust

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Dear Lynette,

How are you guys?  I am writing to let you know that we met with a developmental specialist the other day to discuss whether Abby had a sensory processing disorder (remember talking about it over the 4th of July?)  I am so frustrated.  It was so not what I expected. 

I've been reading The Out of Sync Child.  Lovin' it!  Abby definately is not an extremem case of SPD but several things in the book sound similar to Abby and one section in particular described her perfectly.  Plus I've talked to you about SPD and another mother in my ward who has children who have been diagnosed with it.  I've talked to Abby's physical therapist who had me talk to the OT in the office who had Abby take a sensory profile and said she would probably benifit from some occupational therapy.  Ok, so I'm all geared up when I go in there to explain what has been going on and how I've been reading this book and have seen some correlations.  Well, the first thing Dr. Jordan says to me is that sensory processing disorder is not a real thing.  It is just something occupational therapists have made up and only they know about it.  What!?!  I was totally floored and got very flustered.  I feel like he didn't let us explain half the things we needed to and the ones we tried didn't come out right.  I broke down crying in the middle of the appointment and basically it was all very embarrassing.

He said that Abby acts the way she does because she can.  The consequences that she gets still give her the attention that she wants and so she keeps doing them.  (He sounded like my mother).  Inorder for the behaviors to go away we need to pick the few that are the biggest issues and when she does those we need to lock her in an empty room for a half hour to an hour and then come back to see him in a month.

So now what?  Why if SPD isn't "a real thing" did Abby's counselor suggest we look into having her screened for it?  Why are kids diagnosed with it?  Why are their websites about it and books about it?  Why would some of the things I've read about it fit Abby so well.

Now this totally confirms Tyler's theory that doctors will make things up just to get money.  And now what if we go to another doctor (who I don't know who we'd go to because Dr. Jordan was about the only one who would take her) and they say she does have SPD.  Who do we believe?  Why would doctors say 2 different things?  Can doctors just have opinions on things like this?

Anyway, this was so frustrating to me as we'd been waiting months for this appointment and I'd been studying about it and fasting and praying so hard.  Since I'd been doing those things is what Dr. Jordan said the right answer and I'm just upset because it's not what I wanted to hear.  Or since I don't feel right about it is this not the right answer?  Where do we go from here?

I'd just like to get your opinion since you've gone through this process and Adam was diagnosed with it.  I was just so excited to get some answers and if locking her in her room is the answer then great (we've tried it before - she tore some of her wallpaper off and found a pen and scribbled in lots of places - we didn't try it again).  But what if there is something more?  Thanks for letting me vent!!  I really hope you guys are doing well.

Carrie Ü

Carrie:

I'm so sorry to hear that your experience was such a frustrating one.  I know how emotionally draining all of this can be. 

In my opinion, parents know their children better than anyone else, (even though doctors are specialists in their area).  Go with what feels best to you.  If you decide to take her to OT for awhile, it certainly won't hurt her, and it if help, fabulous.    

If we had followed Adam's pediatrician's advise, Adam would be drugged up on ADD drugs and would never have gotten a correct diagnosis.  Sometimes you need to look behind a doctor's advice, or at least get a second opinion.  I know a lot  of doctor's don't take SPD seriously, but I have no doubt that it is a real thing.   OT was not a "cure-all" for Adam, but we have learned some techniques that help calm him down when he gets upset.  It is very clear to me, that he just feels uncomfortable in his own skin at time and that his senses are out of whack.  (And locking him in his room would never help those issues.)

Certainly, though, I do agree that how you deal with a child can affect or improve their behavior, but if there are underlying issues (like SPD or learning disabilities) those issues need to be addressed before you can effectively discipline.  My sister recommended to me the book "Parenting with Love and Logic".  I absolutely love it.  I am always leary of parenting books, but I like this one a lot.  It is for any child, but what it seems to work especially with Adam (or with kids that are harder to discipline).  I see a difference when we follow what it suggests.  Again, though, his other needs have to be addressed also, before the book can be really effective.  I highly recommend the book.  Here's a link:

http://www.amazon.com/s/ref=nb_ss_1_14?url=search-alias%3Daps&field-keywords=love+and+logic+parenting&sprefix=love+and+logic  

Above and beyond anything else, though, you have the God-given ability to receive revelation on behalf of your children.  You can rely on those feelings and trust them completely.  Fasting and prayer are powerful and have never lead me to chose the wrong thing.  Even if you start heading in a direction that isn't right for her, I am confident that you will begin to feel the "stupor" and get back in the right direction until you feel your actions confirmed by the Holy Ghost.  She is Heavely Father's child too, and He will want what is best for her.  Getting help for Adam was hardly an overnight thing.  It has required lots and lots of research, meeting with many doctors and having many evaluations done, but all along the path, I can see how we were lead to make right decisions and avoid or quit the others.  

I hope this is helpful!  Good luck, and e-mail any time you want!

Lynette