First post- desperate for support

Discussion in 'General Parenting' started by MLA, Nov 25, 2011.

  1. MLA

    MLA New Member

    My 5 1/2 yr old daughter has a very severe regulatory disorder, paired with sensory processing and motor planning deficiencies. I have tried unsuccessfully to find a support group for parents going through something similar but it seems like everything out there is for parents of autistic or ADD children. Raising daughter is like raising two completely different children. She is either incredibly sweet, smart, articulate, compassionate, and generous or (as if a switch flipped) she turns into a monster- emotionally traumatizing our family. This is not something she will grow out of. It will be an ongoing journey, with new challenges at every turn. I'm not looking for answers- I feel like a have a phd in her particular disorder- I'm desperate to talk to other parents who have any idea what I'm going through. If you're out there, let me know.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome to our board. So sorry you have to be here though.

    First of all, who diagnosed your child and are you sure she doesn't have some of the issues you mentioned? I never heard of the disorders that you said she had. Are you maybe not inside the US? I find that different countries tend to call disorders by different names. Has your child seen a neuropsychologist, if you live in the US? If so, I strongly recommend that second opinion. Those symptoms you mentioned sound a lot like a few more well-known disorders, and then you would be able to get help for her. Could you tell us more about her? Can you tell us her early development history? Her genetic family history? Any trauma in her life?

    by the way, I don't know who told you she will always be that way, but I would question the person who told you that. She is five years old. She needs help. I believe strongly that any child can get help and do better. I'm wondering if you took her to some sort of alternative therapist or just a social worker or school said this. in my opinion it was a cruel and untrue thing to say.

    Again, welcome :)
  3. buddy

    buddy New Member

    Hi MLA, So glad you found us. Most of us found this board on a day like you seem to be having.... or a year, tee hee. That is an interesting diagnosis, and as you talk to us you will find lots of ideas and some may fit, some may not.... just know that many of us have started at one place with our kids and ended up in a whole 'nother country!

    In any event, OH YEAH I can truly relate to a kid who is on again, and extremely off again. Can be scary even. His eyes will even change. My son has neurological injuries that contribute, but the experiences from our perspecives I bet are similar in many ways ... and I have been here long enough to know that there are LOTS of folks here who will relate to the behaviors (regardless of diagnosis).

    I too have questions, we are not trying to be nosy, you will find that this group really does care and with detail (not identifying of course) we can better relate and even if we are not directly experiencing your situation, we may have heard of others and know where to help you look.

    I too would love to know when you started noticing these things? What kinds of professionals you have been able to see, are you using any kinds of therapies, including medication or are those things not a good fit for you.... ??? How does she do in school? Are you in the USA, Canada, other country? While there are many here from the US, this is an international community here, so you will likely find someone who can help that way too.

    I am an Speech Language Pathologist (SLP) and have been on diagnosis teams, but even for my son, who has a known brain injury so no questions there.... when I got another diagnosis of autism(he had a Pervasive Developmental Disorder (PDD) diagnosis that I didn't know about until after he was adopted, they said they didn't think it was I STILL went to another place for an evaluation. It was my work clinic that even diagnosis him the first time, lol! Still, it did help to go because the fact is, people did see him differently. It helped me get information about treatment options too.

    Is her diagnosis a mental health diagnosis? (similar to bi-polar?) IF you are comfortable that is.

    Is she aggressive? Mine is, several of us have that here. We are often judged in he real world for that.

    I am glad you are here, I will hold off on any more questions, certainly not trying to pry or traumatize you. Please know you are not alone. This board is full of a huge range of diagnosis and many with multiple diagnosis. And as moms and dads (more moms I think) here, we really do find comfort here.

    Welcome again, Buddy (aka Dee)

    ADDED: Hi, I am back, I just googled regulatory disorder, because I felt like I fumbled thru my post to you. Sorry. OK so is the terminology you are using primarily related to the sensory processing stuff? That seemed to pop up the most. But you said it is paired with sensory stuff. I would love to learn more. I am sure there are others out there that will hear your story and say HEY...that sounds like my kid.

    As I said, regardless of diagnosis, on this will find many who can say to you...yup, been there, done that! I have a MAJOR sensory integration /processing disorder kind of kiddo. Those issues are sometimes the underlying issue for him in his behaviors, other times are things that compound the behaviors. Then there are days like today, he was sooo great. I am very grateful for a day like today!

    again, welcome. You are not alone!
    Last edited: Nov 25, 2011
  4. soapbox

    soapbox Member

    Hi, and welcome.
    I know you said you're not looking for answers... that means you can ignore me if you want, of course.

    Hmmm.... that's not really a diagnosis, but sure sounds like it would be part of Developmental Coordination Disorder (DCD) (developmental coordination disorder).
    In which case, there might actually be a logical explanation for at least part of that "switch" in behavior...
    Its called fatigue.

    Complex motor skills may be taking up so much of her brain power, that some days she's probably completely burned out before the day is half done. SHE won't know what is going on, won't put 2 and 2 together... but some days, the activities will be more at a level she can handle, and other days will be tragically difficult. The more she practices and the more effort she puts in... the worse the outcome becomes... because she's already pushed too far, and has no reserve left. This would be neuro-motor fatigue.

    Add to that... the teacher is likely telling her she has to work harder, do better, practice more... and often, while they don't directly say this yet, the teacher may believe that this kid has an "attitude" that needs adjusting. It is RARE to find teachers who recognize this kind of disability. But because they don't recognize it, they way they interact with the child is contrary to what is needed. This results in emotional fatigue.

    And then... its not unusual to have sleep patterns that are far less than ideal. Some of these kids need MORE sleep than others, some need help to get quality (rather than just quantity) of sleep. But... sleep issues = physical fatigue = major trigger for behavior issues.

    You're probably doing all of this and more, but...

    Have you started a journal? and a parent report (see site resources...)?
    There are patterns to these kids, just not always obvious on a day-to-day basis...
  5. SRL

    SRL Active Member

    Welcome to our forum, MLA--I'm glad you found us.

    You'll find all kinds of support and encouragement here from a diverse group of parents representing a diverse group of children. You'll also find a lot of information and questioning about diagnoses since we've seen so many wrong diagnosis's come through--please always feel free to take what helps and let the rest go.

    Many parents here have found help with the strategies in the book "The Explosive Child" by Ross Greene. You'll find a thread about adapting it for younger children at the top of this board. If you're dealing with a kid whose switch flips easily I'd advise picking up a copy and giving it a good trial. It's different than other traditional parenting methods and feels uncomfortable for many parents at first until they start seeing results.

    A few things I will mention: First is that a diagnosis in these early years is often a starting place--a working diagnosis that often tweaks as the years go on. Second is that I believe wholeheartedly in stealing strategies from other camps, because often many issues overlap so hopefully you've picked up some helpful strategies from Autism and sensory processing disorder (SPD) support groups.

    Lastly, I want to mention that I've been a moderator on this board for many years and what we've picked up on from parents is that when they finally settle into diagnoses that fit their children down the road, is that sensory issues rarely ride alone. That's the reason for the questions from the above posters. Sometimes there's more that has been missed by the diagnosticians, sometimes something is diagnostically unclear due to the child's age or situation, and in some cases issues may be attributed to something else (ie premature birth, lengthy hospitalizations, family instability, etc).

    Again, welcome. We're just moms here on a journey so feel free to take everything with a grain of salt.
  6. MLA

    MLA New Member

    Thank you all so much for your responses. I don't mind the questions at all. A little about me. I'm a former social worker who specialized in children and adolescents with emotional and behavioral disorders. I left that field in the late 90's to run non-profit programs for kids. I had trouble starting my family- four miscarriages before my first daughter was born, and one before my second daughter (an online support group like this one got me through that time in my life). I live in the suburbs of Chicago.

    Here's a dsm explanation of her diagnosis. She has some overlap with many other diagnosis, like Asperger's, ADD or bipolar, but sensory regulatory disorder is clearly the right one for her. Basically, her central nervous system is wired wrong. She's hypersensitive to sensory input so she physically feels things "bigger" than most people. Then she often has an inability to regulate her emotions- both highs and lows (which might look like bipolar). Not all kids with sensory integration disorders have regulation issues. With my daughter, that’s the primary issue.

    Knowing what I know now, I can tell you that she was exactly like this from birth. I just thought I had a challenging baby/toddler. When she was 2.5 a colleague encouraged me to have her observed by a highly respected Occupational Therapist (OT). She was the first to offer this diagnosis. It was a huge relief to know that there was actually something wrong- I assumed that meant there was something I could do about it. From the time she was 2.5 she's been in therapy- first speech for articulation (often goes hand in hand with motor planning issues), then Occupational Therapist (OT) and social work. She was placed in a therapeutic preschool when she was three and has had an IEP ever since. Now she is in a mainstream kindergarten with support. She sees a private social worker weekly.

    She’s had an MRI, thyroid testing and been evaluated by a neurodevelopmental pediatrician who all support the sensory regulatory diagnosis. After trying many medications (ssri’s, and other mood disorder medications) we’ve found some success with Abilify. It’s made a big difference at school but not so much at home. If there is even the slightest change in her body (if she needs to go to the bathroom or if she’s hungry, tired or worried) she becomes completely dysregulated- either manic or violent tantrums. We live in a constant state of trying to prevent. It’s especially horrible for my younger daughter who is typically developing (just turned four and delicious).

    When she's regulated she is honestly the most amazing child. Incredibly smart (cognitive skills off the charts),sweet, loving... all good things. It’s impossible to imagine feeling anything but total love for her. But when she's dysregulated, it's as if a completely different person has taken over her body. It’s like living at war- in constant trauma or threat of trauma. In our worst moments, it’s hard to even access those loving feelings.

    If you’ve made it this far, THANK YOU!! And believe me, this is the abbreviated version. I hope that with this group I’ve found people who can understand what I’m going through even if our situations are different.

    Thanks for listening,
  7. InsaneCdn

    InsaneCdn Well-Known Member

    I think you're going to find, as may of us have, that there is ONE common thread among most of us here... and that's a soft shoulder and understanding nod.

    We may not have walked in your moccosins... nor you in ours... but we know what its like to deal with the kid who's different, the one where every other parent in the room looks at YOU and wonders what YOU did wrong... the reactions from teachers, doctors, family...

    If nothing else (I'm sure you'll find it is much more!)... you've found a safe place to come when the rest of the world doesn't get it at all.
  8. buddy

    buddy New Member

    very interesting this will be a huge oversimflication but would one way to tell this differently from the others that have overlapping symptoms would be that when she is regulated she is totally fine ....I mean my son has better/worse moments but is always delayed, autistic, etc. ???...
    In any event what joins this group are the challenges, the symptoms, the educational struggles, etc. And the stresses and yes...even the joys and successes that having a challenging difficult child can bring. Many here will also be able to relate to the extra challenge of a easy child in the "difficult child world ".

    Really good folks here. Will love getting to know you.
  9. MLA

    MLA New Member

    Yes, Buddy, that's basically it. I really look forward to getting to you you all. Thanks for your open ear.

  10. SRL

    SRL Active Member

    Thanks for the additional information. We're familiar with sensory/regulatory issues, but as I mentioned so rarely see it as a standalone diagnosis that you'll apt to have further questions as various posters first read your situation in other threads. You might want to bookmark this thread to refer posters back to in the future so you won't have to repeat this all and can deal directly with specific issues.

    For what it's worth, as time went by I found that often it wasn't strictly sensory, but that anxiety-sensory cycles had been set into motion to the point where I truly wasn't able to distinguish whether it was sensory at work or anxiety heightening the sensory issue or anxiety based on a previous experience without sensory coming into play at all. For instance, a trip to a museum was always difficult as big, open rooms--especially with crowds--were always problems in the sensory department. As time went on and we'd achieved a lot of success on the sensory side, in the end it was anxiety that was still getting in the way. So much so that long after we'd found strategies to work in such a situation, the lingering anxiety reared up and derailed attempts to even try the coping methods. The outward response I was seeing was exactly the same for any of the scenarios I described above, but to make forward progress so that sensory coping strategies could do their job, the critical point was addressing the anxiety first.

    Time, of course, should be your friend here as she gains more rationalizing skills. Building on small successes became an important part of forward progress--sometimes natural situations but at other times planned.

    :grouphug: Hugs to you, I know how disruptive this can be to a family.
  11. MLA

    MLA New Member

    Thanks, SRL. Anxiety is at the root of most of her issues. It's really all mixed together.

    I'm so grateful that you've developed this site. I can't tell you how long I've been looking for something exactly like this.

  12. buddy

    buddy New Member

    Thanks for your patience MLA!
    Anxiety making things much more complicated .....I guarantee you will hear echoes on that. My son was recently in hospital and on and off thru the years, inc. there, he has anxiety not otherwise specified diagnosis added. Some of these places just diagnosis what they are seeing at the moment and based on what they are specifically treating just use that issue for ins codes. (I think it complicates things in the long run but whatever ....) Q's anxiety drives nearly all of his meltdowns. Sometimes triggered by seizures sometimes fears sometimes the sensory issues put him so on edge nothing can be reasoned thru. Heartbreaking at times. Exasperating at others.
    Last edited: Nov 26, 2011
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I agree with bookmarking this site. Sensory issues are usually secondary to other issues. Wrapped together with high anxiety it reeks of some sort of high functioning autism, but you'll have to wait until she is older to get a more accurate diagnosis. Sensory issues can get better with the right type of treatment. How does she relate to her same age peers? That's important.

    Keep us posted! :)
  14. Ktllc

    Ktllc New Member

    Just want to say welcome. I am dealing with a lot of similar issues, although we do not have a full diagnosis yet. sensory processing disorder (SPD): yes. Motor planning: yes. Recently, the Devel. pediatrician mentioned anxiety. All those diagnosis are like dancing in my head and it's so hard to know which one comes first.
    This group will/does understand your struggles!