Newbie questions about ADD-I, Sensory Integration Disorder (SID)

Discussion in 'General Parenting' started by LHB, Jun 14, 2009.

  1. LHB

    LHB Starting to figure it out

    Hello Everyone!
    I'm a newbie here. I posted earlier this morning in reply to School says there's nothing wrong with difficult child 1, but haven't seen it appear yet. So, I figured it was waiting for me to have good manners and introduce myself!

    I have a step daughter who is 10 and is generally a great kid. My husband got custody of her and her brother two years ago cuz their mom's boyfriend beat up mom and was rough with the kids, etc. After a year, DSS (who is 16 yo) couldn't take the rules at Dad's and went back to Mom where he displays full blown ODD. In contrast, DSD is a sweet little girl. But over the past two years of being with her I started to notice a number of things: can't handle more than 1 or 2 instructions at a time, total zoning out, can't catch a ball, can't button a shirt, forgets ever learning stuff at school, constantly asks us to repeat things to her, forgets how everyday things work or what everyday things are called, etc. When I made a list of everything I noticed over a couple of weeks, it was a very scary list!

    I did my own research. When I saw the definition of ADD-Inattentive, I had an OMG moment. It totally described her. Then I came across a link to Sensory Integration Disorder (SID). Another OMG moment. I've never heard of Sensory Integration Disorder (SID) before and didn't think all her quirks actually had a name!! So, I took her to her pediatrician. She suggested an EEG for the total zone out issue to rule out any type of seizure. She also had us do the Vanderbilt survey and take it to her teachers. To me it seemed like an inappropriate survey because it centers around the hyperactive kid. But, what do I know?! The teachers responses did not show any issues and the Dr said she could not give a diagnosis of ADD. Fine. But, I'm still dealing with this girl who causes me to go thru cycles of patiently working with her ("Please repeat what I just asked you to do.") to going crazy over her zoning out ("GO DO WHAT I JUST ASKED YOU TO DO!")

    My husband and I are both laid off professionals right now, so spending a lot of money on evaluations and counselling isn't in the budget at this time. And I wouldn't say that her symptoms are "disabling". But, they cause everybody quite a bit of frustration almost every day. I'm also worried about next year in 5th grade for her. I've helped her with school work ALOT this year, but have decided to back off next year and let her true abilities show through.

    I've been reading on this site for many hours today between loads of laundry (at least it will appear that I got something done today!) and I'm so thrilled that you are all here. I'm looking forward to any advice you can give me on how to proceed next.
  2. KTMom91

    KTMom91 Well-Known Member

    Hi and welcome! Miss KT still has trouble with multi-step instructions (at 17), and I remember those frustrating days when "go in the bathroom, brush your teeth and comb your hair" resulted in maybe one of those things getting accomplished. I finally started giving instructions one item at a time. She needed absolute structure, where A follows B every time, and she still has trouble with changes in routine. It sounds like your DSD has more going on than just ADD, in my opinion. Weekends are usually slow; others will be along soon.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there.

    I would take her to a neuropsychologist. My guess is that she is on the autism spectrum (check out Pervasive Developmental Disorder (PDD)-not otherwise specified), but there is probably more going on (remember my opinion is a layperons like yours, which is why I suggest a neuropsychologist evaluation--very intensive). I find a lot of her symptoms disturbing--her forgetfulness and zoning out possibly physical in origin. I don't believe she is being deliberately frustrating to you.

    Not remembering things from day to day make me wonder if birthmother drinks a lot and maybe drank while the child was in utero. This can cause this sort of "swiss cheese" thinking...and other deficits as well. Did hub ever tell you about her early development? Did she have any delays?

    Does this child understand how to socialize with her same age peers or is she inappropriate, maybe talking too much, standing too close, or lowering her eyes and hiding in a corner or just blurting things out of thin air? Again, I'm thinking there is a possibility she is on the autism spectrum (which is often mistaken for various types of ADD/ADHD, but is more severe).

    Does she have any mood swings, rages? What is the biological history like on both sides of the family tree?

    I highly recommend a neuropsychologist evaluation as I've said before. in my opinion no other type of assessment comes close to this type. A lot of us here really think they are very good evaluations, superceding other types. Educators are notoriously poor diagnosticians. It isn't their field of expertise. I wouldn't allow their opinion to cloud yours. You need to have an open mind about what may be going on with this precious child.

    Don't forget that these children have also been traumatized. Did the boyfriend injure her? Has she ever had a head injury? Did this jerky boyfriend maybe sexually abuse her? These matters all need to be taken into account.

    Welcome to the board. Really, really good/nice people come here and we do want to help you. The more info we get, the more we can give out our layman's opinions.
  4. LHB

    LHB Starting to figure it out

    I have never looked into autism before but I will. When I asked her what she thinks about when she zones out, she said she doesn’t think about anything. She said it’s just nothing and then when she stops zoning, she has to kind of wake up and remember where she is. So, I’m glad we’re going for the EEG on Tuesday. No, I know she’s not doing any of this deliberately – she’s a good girl who shows only a desire to please and to do what’s right.

    Here’s a little more info:
    -Her birth mom did not drink while pregnant, but did before and after. She’s a closet alcoholic. (DSD: Why does my mom have bottles of wine in grocery bags in her bedroom?)
    -I’ve known DSD since she was 3 and I never saw any significant development problems. She is a bit more immature than kids her age. Her school performance and behavior has been average to above average.
    -She seems like a normal 10 yo in socializing. They’re all goofy and talk too much and stand too close!! She does blurt thing out. Last weekend she had a friend spend the night and while we were all talking, DSD said something totally off topic and her friend even said, “What did you say that for? It didn’t have anything to do with what we were talking about?!” She does that to husband and me when we’re talking at dinnertime.
    -She does not have major mood swings. She’s started puberty physically, but I haven’t noticed any out of the ordinary mood swings. I don’t know of any psychiatric issues in the family. I consider her mom as a psycho, but that’s just my opinion. ;)
    -Yes, I think she’s been traumatized. She has all kinds of little stories of mean things the boyfriend did to her (made her clean up her own throwup at 7 yo, pulling her by the hair, blowing cigarette smoke in her face…). When she first came to live with us, I asked her if he sexually abused her (using 8 yo language, of course) and she said he didn’t. I believe she would tell me. We are extremely close and she tells me she wishes I was her real mom. After she came to live with us two years ago, her brother began to torture her and call it “teasing”. He taped to the washer with duct tape, pulled her pants down in front of his friends, held her upside down by her ankles, and he showed her pictures of naked women that she thought were “so gross”. She told this stuff to the school counselor and the counselor called CPS. CPS made a visit to mom and brother. After that, both mom and her brother called her a “traitor for telling those lies to CPS, and how could you go against your own family like that.”

    OMG – I cannot believe this. While I was writing this post DSD was sitting in the room with me and told me that while she was at her mom’s this weekend for a visit, her brother shoved her in the pet carrier. I asked her if she screamed bloody murder and where the heck was your mom?! She said her mom was right there in the kitchen and told her to “just take it, your brother is just playing.” She said she was struggling and yelling and he got her in the crate and tied the door shut. Then he got a squirt gun and would squirt her every time she said anything. Finally her mom came out of the kitchen and told him to let her out, this is getting boring. He began to rattle the cage on the floor with DSD in it. Mom and bro started yelling at each other and he finally let her out. I am absolutely LIVID about this. The problem is that there is nothing we can do about what happens at mom’s house. She will just argue that “the kids were just playing” and DSD is just taking things too seriously or out of context. I told DSD that she should have run to the neighbors house and called us to come get her. She doesn’t get it that this was TORTURE. That‘s how screwed up her poor little head is – her mother let’s her think this is normal. My husband is out of town and I called him right away. But, there really is nothing we can do. The ‘system’ *****. husband told me and I agree that she needs to tell her mom that she doesn’t want to go over there anymore. But, when I said that to her, she got all teary eyed and said, “How can I say that to my own mom?” I told her, “how could your mom stand there and let bro torture you??” She acts like an abused woman at 10 years old. What can I do???
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hon, I think maybe her brother sexual abused her. Pulling down her pants and making her look at porn is a form of sexual abuse. I know this because we went through it and the sexual abuse expert/psychologist told us it is traumatic and sexual abuse. And he may have molested her as well. Even honest kids don't tell their closest adult trustmates about sexual abuse. I thought for sure my daughter would tell me--we were like fric and frac and she did not, she was too ashamed and thought it was her fault PLUS she was afraid of her abuser. He said he'd kill us all if she said a word, and he had hurt her so much that she believed him. And I believe he would have too if we hadn't made him leave the house. She should NOT visit her mother. Ever. Go to court on that and have her tell the Judge what has happened. Call CPS to back you up. Call CPS on this woman and her brother too. Don't tell her you are doing it because she is only ten and they made her feel guilty in the past. Just do it on your own or she will continued being tortured.

    in my opinion she needs a therapist who is famliar with various types of abuse. She has gotten it from stepfather AND brother (I wouldn't allow this boy back in the house--let him stay with mom). Abuse experts are best for kids who have suffered from abuse. Believe it or not, many therapists don't "get" how abuse affects kids--and can't coax sexual abuse allegations out of kids. These traumatic experiences than cause all sorts of problems in the child's teen years and adult years and entire life unless they are resolved, poor girl.

    Is she in any sort of treatment? You can call a Domestic Abuse shelter to get names of people who work with abused children. Although you and your hub did not abuse her, she was abused. And they will help you. (((Hugs)))
  6. LHB

    LHB Starting to figure it out

    Thank you for the reality shake! I've already called CPS and reported everything she told me (including the dog poop all over their carpet and the ringworm on the dog). I told them that this type of activity had been reported a few months ago and it looks like it's starting up again, so hopefully that will get them to act. I told CPS that she goes to mom's all next week (first week of summer break) and she often has bro "babysit" her. I told them DSD said she's afraid of what bro will do to her. CPS does not like to hear that a child is "afraid" so I believe that put a fire under them too. I'm going to coach DSD today and help her to confidently tell her mom, "you let me get thrown in a cage and squirtted with water like an animal. I don't want to go to your house." husband agrees.

    So, I'll let you all know how the EEG goes tomorrow. But, I know we're obviously dealing with a lot more than just possible seizures. I am also looking for a good child abuse counselor in the area.
  7. susiestar

    susiestar Roll With It


    I am sorry that this is happening to your family. It is always so hard to deal with. I have been there done that with an older son who abused a younger daughter. I know how much it hurts when you realize that you can't keep your kids safe. It really is helpful to have therapy for YOU and for your marriage and for the entire family as a group. It helps to let kids know you will do anything needed to keep them ALL safe.

    I am glad daughter has you to help her. And that your husband is on the same page as you about this.

    I read you are having an EEG done. Is it to be a sleep deprived EEG? If at ALL possible see if they will do it that way. You are far more likely to find problems in a sleep deprived EEG. Not create problems, but actually see seizure activity.

    Have you researched anything on Absence Seizures? I had never heard of them until we had my older kids go through the sleep deprived EEG. daughter wasi n 4th grade. I had her tested as a part of being thorough before we trialed ADHD medications. She sure seemed to fit the ADHD-Inattentive diagnosis. But I got a call to come in to the neurologist (using a pediatric neurologist makes a HUGE difference) to talk about the results.

    Of course that call is an instant "OMG!!! What is Wrong???!!!??!" moment. We were told that she clearly showed Absence Seizures. It is when the brain just stops working for a few sentences. The child is quite literally "not there" when the seizures occurred. My Jess had more than 1 seizure every minute!!

    So she was having trouble in school and at home especially with following directions. She is a very good natured child, and very clearly not ODD. She made mistakes because she didn't hear or absorb the instructions or problem or challenge.

    It took us quite a while to get the medications adjusted. But they make a huge difference.

    Anyway, welcome and I hope the tests come back with no problems. Or with easily treated ones.
  8. ML

    ML Guest

    I can speak to the zoning out part because it describes manster, also 10. He couldn't even play baseball because we couldn't get him to engage long enough to keep his eye on the ball. His anxiety and sensory issues were at play there. He has either aspergers or hf autism. The difference is speech and while he wasn't exactly delayed, he said a lot of words funny and still struggles with "r". Otherwise he was developmentally on target for the most part.

    The absence seizure thing intrigues me.

    Beyond that it seems that she may be experiencing trauma on top of it. I'm so sorry. I pray you and your husband can get her the help she needs. Bless you for being the catalyst to help this family.


  9. AnnieO

    AnnieO Shooting from the Hip

    …This sounds like my difficult child 2. He's almost 11.

    …difficult children biomom (BM) has a 'partying' problem… According to the kids.

    …You have the female version of my difficult child 2 on this. Does she interrupt a lot or talk incessantly about certain subjects? To the point of extreme boredom on your part? (But you listen anyway.) Does she chatter about these things with no clue that her listener may not be at all interested, even with obvious cues? (Yawning, eye-rolling, verbal 'can we talk about something else…')

    …difficult child 2 doesn't have mood swings either, not really. And it sounds like her BM is a lot like my kids' BM.

    …'Our' BM did this too. difficult child 2 told the school she punched him in the head, they reported it, she punished him worse… She called CPS on husband for something he actually did not do to difficult child 1, they talked to both kids, she grounded and whipped difficult child 2 for talking to them.


    It used to be that difficult child 1 would listen to nothing about her mother. We didn't talk bad about her, but out of the blue difficult child 1 would say stuff like, 'Stop bringing her into it!' when we hadn't. Then this past February difficult child 1 figured out what BM was really up to. She has refused to see her since. FLAT REFUSED. She asked me at one point, 'How could my own mother do this to me?' I had to tell her I didn't understand.

    Be careful with coaching the poor kid on what to say. It can get held against you in court. However talk to her and ask her if it would help if she got to see her mom in a supervised setting, without the boyfriend and brother. Many areas have visitation centers run by the court.

    I agree with a lot of others regarding the neuropsychologist evaluation… We're taking difficult child 2 this week. However, don't be surprised if you also discover PTSD in that. Because she has been through more than any little girl should have.

    in my humble opinion " sexual abuse does not require penetration. If you can find a counselor that specializes in this, it will help a lot. A local DV hotline or Children's hospital can help with that.

    {{{{{HUGS}}}}} I'm there with ya!
  10. LHB

    LHB Starting to figure it out

    Well, DSD got up the nerve to call her mom this morning. The reaction what just as I predicted. At first she had no idea of what DSD was talking about, then said that this was something that happened so many months ago. DSD followed my instructions and didn't let mom go on and on. She said she didn't want to have a long discussion and just wanted to let her know that she was afraid of her brother and doesn't want to go over there any more and said she was going to hang up now. Mom called back 5 minutes later and talked to me. We rarely talk at all. Her version of the story was that the kids were having a good time and DSD wanted to know what it would be like to be a dog. She accused her daughter of constantly setting her brother up to get in trouble and it seems like every story that comes from her house has the slant of abuse to it. She told me she wouldn't just stand by and let her daughter be subjected to abuse. She said she had been accused of being an abusive mother before (that's when CPS removed the kids from her house) and that this is not something she needs in her life right now. I just said, "I'm sure it's not."

    Anyway, believe it or not, mom says she will be at the hospital today for the EEG. This should be fun. No, this is not a sleep EEG, the Dr requested an awake test. I don't really know what any of this means, but I have a feeling I'm about to learn. I did look into absence seizures briefly and that does sound like what DSD is experiencing.

    StepTo2: sounds like our kids have a lot in common with their moms. I coached her on what to say to mom, but didn't let her read anything off. I told her to make it her own thoughts. It's scary how this little girl becomes a limp noodle in front of her mom.

    Yes, she does talk incessantly. Even if I go in and out of the room she'll just keep going! Have you ever seen that car commercial where the dad is picking up the little girl from school and the girl is chattering the whole time is buckling her in, closes the door, walks around the car and drives away - the whole time the girl is talking a mile a minute. husband and I always laugh cuz that's our daughter.

    Well, I'm off to pick up DSD from school and head for the hospital. I'll write tomorrow and update you all.
  11. AnnieO

    AnnieO Shooting from the Hip

    It's never about the kids and what's best for them. It is always about themselves. BM used to be like this about difficult child 2. Now, since difficult child 1 refuses to see BM, she's turned it into all difficult child 1's fault that there are problems. When it's not her, it's husband. Occasionally me, but I've proven to not put up with her poo so she's more careful.

    Make sure that DSD knows - if she is afraid - she does not have to visit. BM can call the police if she likes, but all that has to happen is for DSD to say once to the cop she's afraid. Once. BM may try to take husband to court, but unless you have our judge, you'll be fine. The kids stating they're afraid is more than enough.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    It's not about what's good for Bio. Mom. She sounds like she is making excuses for her son. Not a good sign. I believe daughter. I wouldn't let her go visit bio. mom. I'm surprised husband will even consider it. She isn't going to push it because she doesn't want CPS on her tail. Just don't send her. A lot of abused kids protect their mothers. They often take on a parental role to the mother while allowing themselves to be abused. It's very sad, but true. Bio. mom, brother and boyfriend sound like sick puppies. She needs stability and that's you and her dad. (((Hugs)))
  13. AnnieO

    AnnieO Shooting from the Hip

    This is absolutely correct, it should always be about what's good for the kids. And this boy being allowed to get away with abuse isn't good for him either. But you can't stop that. You can keep daughter safe though. And if BM calls cops about missed visits? Again, have her tell cops she's afraid.

    Abused kids protect parents because they want that parent to love them. It's that simple, but getting the child to understand/admit that is a nightmare. You cannot make that happen. She seems to have already gotten glimpses of the light, so hopefully she will "get it" soon. difficult child 1 had it crash on her like a load of bricks in February and her behavior hasn't been perfect, but much better, since. But she still doesn't understand entirely how her own mother could be the way she is. She has asked me a few times why I love her more than BM does. I told her simply that she is the daughter of my heart. I make no excuses and give no reasons for BM's actions.
  14. LHB

    LHB Starting to figure it out

    No, we will not be letting daughter go back to her mom's for a long time. She will not call the cops. She knows she is doing too many things wrong in her house to do anything to cause them to come out there. Little does she know that I've already called CPS and called the police to let them know that her son is driving around town with no license and no insurance....yep, that's what's going on over there.

    I know that DSD has had enough of it, but she's very kind hearted and yesterday she went through the phase that I was prepared for: She regretted telling her mom she didn't want to go over there and asked me "What if mom says she's sorry, then can I go back over there?" Poor sweetheart, she's so torn. I told her I knew she would be feeling sorry for what she said to her mom and that's okay. I asked her to just hang in there, trust that Dad and I love her very much and our first thought is her safety and giving her a loving home.

    Now I'm just waiting to see if CPS talks to BM because that's when everything will hit the fan. She will be extremely angry. Poor husband is off at a conference in New Mexico and probably dreads coming home to all of this. But, this time I am going to push to take this to court (rather than just an "agreement" between the two of them) to modify the parenting plan so DSD no longer has to spend the night at her mom's. The CPS file is big enough that it should be an easy win.

    Meanwhile, I'm still trying to figure out what to do about DSD's processing/learning issues. I'm waiting to hear from the doctor about her EEG yesterday and I'm also looking into a neuro/psychiatric evaluation. Unfortunately, money is a big issue with both of us unemployed. But, I'll find out the cost and what our current coverage is under COBRA.
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Why didn't you tell CPS about the molestation? The license is BM's problem and son's problem. Who cares? The abuse of her daughter is the BIG problem and this young child needs to have you two step up for her. I wouldn't make her tell BM anything. I just wouldn't send her. In fact, I wouldn't have her talk to BM. And I wouldn't be thinking of ever sending her back. Have supervised visits with husband there. I wouldn't ever let her alone with those people. They aren't going to care about protecting her, they will absolve son from his henious wrongdoings, and daughter is too kindhearted and browbeaten not to still be nice (at least until she's an adult and the damage is too great for her to ignore it anymore--she could be hurt for life). Why didn't you mention the abuse of this child to them???? If daughter says, "Maybe I should tell mom I'll go over there" I would say, "I'm sorry, honey, but we love you and it's not safe to go over there. It's not YOUR decision. We are making a safety decision for you and you will not be allowed to go over there, even if she wants you to and even if you feel guilty." I don't think she should even be a part of the decision at her age. I'm baffled...(((Hugs))) I know this is hard.
  16. AnnieO

    AnnieO Shooting from the Hip

    I don't know what state you live in, but if you can find the web site for Job & Family Services, you probably qualify for Medicaid since you are unemployed. The Healthy Start Healthy Families initiative (in Ohio that's what it's called anyway) will cover almost 100% of everything for the kids. YOU may not be eligible, but I'd bet DSD will.

    That will mean your visits to the doctors are covered for her. That will enable you to get the help you need.
  17. AnnieO

    AnnieO Shooting from the Hip

    Very good point... We did this when there were issues with BM's creep. WE made the decision due to safety. So then we went to court... And husband was sentenced to 3 days in jail, suspended on the condition that he never deny visitation again. BM is a sociopath who puts on a good act for the court. All sweet and the victim. Never mind that it's the kids who are really hurt by her games. The problem now is that we go back to court in July, because on the first weekend visit after this, both kids refused to go - so she filed a contempt.

    No, it should not be a child that young's decision. But all too often, it happens that way because of the court. However in this situation, it looks like the mother won't file. So that's a good thing. But - be prepared just in case.
  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    But this BM doesn't want to go to court or deal with CPS. She won't bring her husband to court. frankly, though, if I was husband, I'd rather sit in jail for three days than let my daughter near those monsters.

    I think it's safe to say that this birthmother is too afraid to get the authorities involved. I think this girl can safety stay away from her without the family suffering ramifications.
  19. AnnieO

    AnnieO Shooting from the Hip

    Thank goodness for that!

    It's not that husband is afraid of jail. In fact he's hoping he will get sentenced to actually serve the time, even though it isn't his fault really. because if this happens, difficult child 1 is likely to call the media herself. She has had it up to there with BM.

    We want the kids to have a good relationship with their mother, and without proof of actual abuse... It's been a long hard road and husband just recently got full legal custody. So the next step is being workd on. However... difficult child 2 has recently begun saying he does not want to go on weekends or for vacation because BM won't let him play with his friends. (He has no friends there... And all of his friends from our town are "bad"). If he refuses to go, and husband goes to jail, and the media gets called by a 14-y/o...

    Now that I've sidetracked this... LHB - you have made the right decision to not "let" her visit. This is protecting her. And I do believe that is the single most important thing here!
  20. Pookybear66

    Pookybear66 New Member

    Wow LHB, sorry I did not read this sooner so I could've given you some insight to the awake EEG test. Oh well, I'm hope it was "no big deal" as it was with my ds. My story is similar in the academic aspect. My ds is 9. He does poorly in school with reading/writing/spelling work and "spaces out" often. He talks alot and is a wonderful child with a few problems right now. His teacher earlier this yr noticed him not paying attention to her every word-had the nurse observe-and recommended an EEG. We decided to do it because we couldn't DISPROVE that he WASN't having these. We wanted to cover all our bases. Luckily, he wasn't. But it would've answered a lot of questions if he had been.
    So now we have gone to a reg psychologist and after one meeting we have him saying ds has Add-I, Odd, possible aspbergers, and maybe something else we don't know about yet LOL! (I am going to post about this next). But, I just wanted to offer my support. Yes, "The Explosive child" will help you cope a bit but mostly your daughter needs some support and to know even though its her BM and bro that not everyone is perfect and BM/bro needs some help too.