Please Help, At Wit's End...

Discussion in 'General Parenting' started by orangeblossom, Feb 8, 2018.

  1. orangeblossom

    orangeblossom New Member

    Hello,

    I just stumbled across this forum as a result of searching for help online. While I'm saddened there is a need for this forum, I'm so glad to find I'm not alone in dealing with a beyond challenging child!!

    husband and I have four kids aged 14, 12, 11, and 8. Our super challenging child is the 11-year-old (whom I will refer to as DD3). I apologize in advance for the very long post!

    Since the end of pre-school, DD3 has given us a problem going to school. What this often looked like in elementary school was her refusing to go into her classroom and the teacher periodically having to peel her off of me or husband. She seemed to improve during 4th grade and the beginning of 5th grade. However, things started going downhill again in sometime in 5th grade. At this point, we started noticing some odd behavior such as DD3 refusing to wear certain articles of clothing because she didn't like the way they felt. Or things had to be done in a certain way or a certain order, otherwise she would have a meltdown. It got to the point toward the end of the year where she literally wore the SAME outfit to school EVERY DAY. We would wash it daily, of course, but still!! She would refuse to dress herself, so husband would have to help her get dressed in the morning (we split drop-off duties because our kids go to two different schools). DD3 also began to not do some of her schoolwork/homework, which was not typical for her. She is a bright kid, very organized, and has always taken pride in her work.

    It was during this year that we finally took her to get evaluated by a psychologist. She was diagnosed with mild sensory issues and mild Obsessive Compulsive Disorder (OCD)/anxiety. She started therapy. However, because therapy required that we follow up at home with activities, it did not work because DD3 absolutely refused to cooperate.

    It's worth noting at this point that DD3 also suffered bowel movement issues for several years in elementary school...specifically that she would refuse to go. We eventually had to put her on Miralax. She also went through a period during the summer after 4th grade where she barely ate. She got so skinny, we were terrified. I began to wonder if there are some serious control issues at play.

    DD3 has displayed this kind of behavior at home, as well. There have been multiple occasions when we had a challenging time going out to eat, going on an outing, or making it on time to important family events because she refused to cooperate in getting dressed, etc. This happened as recently as Thanksgiving and Christmas of this year...she had no problem standing barefoot in the lobby of her grandparent's apartment refusing to go upstairs while neighbors walked by on their way in and out.

    So, as she was getting ready to transition into middle school, we were able to obtain an IEP for her. And thank goodness we did, because it has now gotten to the point where we struggle to get her out of bed every single day. EVERY SINGLE morning, we have to fight to get her dressed. She still refuses to dress herself, down to the shoes. She is at least wearing more than one outfit this year, but we literally rotate between three outfits because she refuses to wear anything else. husband drops her and her sisters off at school, and he has to physically carry her out the door and put her in the car. She is a tiny but feisty thing! When they get there, she refuses to get out of the car. When husband finally manages to get her out, she will put up a fight to get to the door. She has a team of people (angels, really) that take turns coming out to greet husband and DD3 when they get to school, and there have been times when the guidance counselor has had to physically carry her up the stairs to her office. And the fact that the principal, staff, parents, and her peers are watching has absolutely no bearing on her behavior.

    She has also started getting physical with us when we're getting her dressed, trying to get her in school, etc. She will kick us, scratch us, and hit us with a hairbrush or her hands. She is very quick to anger. When she is angry she will yell at us, talk back, mock us, and throw things. She will also display destructive behaviors (for example, she will dump all the clothes out of a basket onto the floor, or she will take a pair of scissors and cut others' personal property). She takes on a really mean demeanor that is, quite frankly, a little scary at times. She refuses to brush her teeth and take a shower, even though we have clearly explained what can happen as a result...as of this writing, she has not showered in about a week. Again, it almost seems like a control thing. She will absolutely dig her heels in and not budge one bit. She is also refusing to do her homework which will, of course, be reflected in her grades.

    We've tried reasoning with her, rewarding her, punishing her, scaring her (Mom and Dad can go to jail if you don't go to school! Your teeth are going to fall out of your mouth if you don't take care of them!), taking away her favorite toys, and absolutely nothing phases her.

    We had her seeing a family psychologist, but while we liked the therapist personally, her style of therapy did not suit DD3's needs. I recently contacted another facility where they have a psychiatrist who specializes in this kind of behavior and uses techniques such as CBT, but they don't accept insurance and we can't afford the weekly sessions.

    Lately, I have been really worried about what this all means for her future. Is she going to get worse? How is she going to make it through life behaving like this?? Today, however, I also started feeling a rage toward this child, coupled with helplessness. I love my child, and she can be such a sweet, loving little girl, but I feel like I can't take this much longer. husband has a applied for a new position which means that if he gets the job, I will have to do drop off at both schools and, frankly, I feel like I will lose my mind having to deal with DD3s behavior every morning.

    And yes, we have tried to think of anything that might have triggered this behavior way back at the end of preschool. The only major even that happened is that her baby brother was born. I suppose jealousy/attention issues could be at play, but she just loves her little brother.

    If you're still reading this, bless your heart (and thank you)!! If you have any suggestions on where I should go from here, I would be ever so grateful!
     
    Last edited: Feb 8, 2018
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Did you ever have her evaluated by a neuropsychologist (a psychologist with extra training in the brain? She sounds t o me with the Obsessive Compulsive Disorder (OCD) and sensoey issues and likeness for sameness as if she could be on the high end of the autism spectrum. This is often misdiagnosed by psychiatrists because it is a neurological difference, not a psychiatric problem at its core and does not really respond well to therapy. Many autistics get frNtic panic and fight when forced out of their comfort zones. They need autism interventions and with them they tend to improve ALOT.

    My son who is doing really well has this and was misdiagnosed many times. To find it requires very intensive testing that psychiatrists and regular psycologists don't do. We had ADHD, bipklar, ODD and Obsessive Compulsive Disorder (OCD) as wrong diagnosis.although Obsessive Compulsive Disorder (OCD) and sensoey issues are a big part of autism. So are cluelessness with social skills.

    My son was being wrongly treated and medicated until age 11. In fact psychologists insisted he did not have autitistic spectrum. They were wrong.

    Just a thought.
     
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  3. Tired mama

    Tired mama Active Member

    I agree with somewhere out there. I would have further evaluations done. If her therapist isnt working find a new one. We also went through many diagnosis before we came to what i hope is the right one. My son also gave us a lot of issues about going to school so you have my sympathy for that as well. Good luck and welcome.
     
  4. tryingaunt

    tryingaunt New Member

    This sounds like my son at that age, he was diagnosed at age 8 on the autism spectrum. 5th grade was terrible at best, and his psychiatric said a lot of the negative behaviors we were seeing were most likely due to puberty. Middle school was a lot better and once he reached high school, things improved. He was the same way getting him out of bed, we opted to have him on a late start, one bell later than the school day, with the first bell being a study hall for him so he wasnt missing classes. this was built into his IEP. He has since graduated and is still the same way but works not until 3pm so he can avoid the morning stress all together. Sounds like you have done all the same things we did at one time or another. It did get better for him, and us. But this really does sound more like a spectrum disorder to me, which does present as several other diagnosis.
     
  5. Hi OB,
    I also agree that this does sound like she may have autism. My son has mild autism and although he did not have those problems, his friend did and eventually refused to leave the house unless it was with his mum- this boy wasn’t diagnosed until he was 16 and they were frantic to know what was wrong.
    I feel for you having to go through that every single day, it must be exhausting and so frustrating.
     
  6. ARoomWithAView

    ARoomWithAView New Member

    Hi,

    Your daughter could possibly be suffering from PANS/PANDAS, which often manifests with Obsessive Compulsive Disorder (OCD), separation anxiety, regression, sleeping issues, food aversions, etc.

    Here are a couple of links (there are also Facebook groups, etc):

    What are PANS/PANDAS?

    PANS and PANDAS - autoimmune disorders that affect children

    A PANS mom recently published a book called “Shadow Syndromes: Shining a Light on PANS and other Inflammation-Based Illnesses Plaguing Today’s Youth” about her family’s struggle on Amazon: https://www.amazon.com/dp/B0791391HH/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

    There is also a documentary called “My Kid is Not Crazy”: Home | My Kid Is Not Crazy

    Please note that although there are PANS clinics at prestigious places like Stanford University, some providers view this as a controversial diagnosis. I encourage you to find a provider that is PANS literate.

    And a big, encouraging hug to you.