Desperate mom needs advice!!!

Discussion in 'General Parenting' started by caetlin, Oct 1, 2017.

  1. caetlin

    caetlin New Member

    Hi Everyone! I'm so relieved to have a place that I can seek some guidance from all of you amazing parents that have been there done that -any advice is much appreciated! Here goes, I'll try to be brief.

    My son, now 5 and having just entered Kindergarten has ALWAYS been challenging. He was born screaming and hasn't stopped. We had him evaluated by a private psychologist and the state run integrative services at the age of 2 for symptoms that seemed to coincide with autism -he didn't form deep attachments to family members, had no interest in peers, wouldn't respond to his name or make eye contact, deeply obsessed with trains and nothing else. From age 2-3 he also developed some Obsessive Compulsive Disorder (OCD) type behavior (would line up toys in a strict line, all facing the same way and couldn't handle anyone even walking near him for fear they would be disrupted, we had to put a fence in the corner of the living room so he wouldn't have anxiety when another member would walk in the room for fear that his project would get touched, he'd insist on his blankets be spread out in front of him with no wrinkles and would melt down if one line was out of sync, etc)

    The evaluations always came back with minor deficiencies in the areas of social and emotional (gross/fine motor is perfect) but nobody could put an actual diagnoses to him, especially considering his age. At the age of three, overnight, he began REFUSING to return to daycare -a place he had gone for two years. I should mention that he never spoke about his peers, never spoke about his teacher, never seemed to have much interest in them.It got so bad over the course of two weeks that he began having full blown panic attacks when I would try to take him there, hitting me, kicking, biting, she would have to pry him off of me so I could leave. The teacher said he was having worse and worse days, she couldn't control him, and he had constant meltdowns.

    He has always been loud, like so loud that we've had his hearing tested three times -he hears fine. He's so loud that people stare no matter where we go and places like museums and libraries are my worst nightmare. Not only is his normal speaking voice loud, but he shreaks and screams all the time. It's often not even out of anger or melting down -it's for effect -or release, not sure which one. It's SOOOO disruptive.

    We left that daycare and put him into the Special Education preschool along with a one on one aid. His days got much shorter with significantly more support and things got a bit easier. Still no mention of his peers, but he became very attached to one teacher. 6 months later he was evaluated by the CDC (a team of clinicians in our state who travel around assessing these types of kids) and they said the jury is still out on ADHD or an anxiety disorder and gave us tips on meditation techniques etc. Meanwhile, at home we were still dealing with CONSTANT meltdowns, angry explosions at the smallest things, complete inability to be flexible or play back and forth with another child, rigidity in everything and completely controlling the household regardless of the approaches in parenting we tried to take.

    At the age of four, and second year in the Special Education preschool, the teachers began to see improvement and wanted him to try the second year without his aid. This posed a scheduling conflict for me, so I quit my job and he got more one on one than he's ever had (he has a sibling 18 months older and a sibling 18 months younger) there is no doubt that his behavior drastically improves with one on one -now is that because he can control the environment more? Or is there less stimulus?

    So here we are now, three weeks into kindergarten and the good news is -he loves it. so far. However, his teachers are struggling and his peers are less than enthusiastic. The main dilemma that they're having right now is with his volume. The bus driver, the teachers and his peers all complain about his noise level and nothing seems to work including distraction with sensory manipulation tools, time outs, visual reminders etc. It often seems like he gets a kick out of driving everyone crazy. On that note, he has never shown much remorse. He will often be quick to apologize for something, but it's usually an automated response to avoid punishment, although most punishments don't mean much to him anyway. It's less than 50% of the time that I see him act genuinely guilty or sad about something. He's very manipulative and will lie or deny to avoid punishment. He's also EXTREMELY destructive with inanimate objects, but sometimes it's unintentional, but a lot of the time it's purposeful. I'm talking broken windows, holes in walls, kiss any clock or watch or hand tool goodbye. The ADHD side of things wouldn't surprise me at all, as my husband I both have that and he certainly is hyper and has a short attention span, but the rest of it I don't understand.

    So anyway, I don't know what to do with this kid. I've seen therapists, specialists, doctors, Occupational Therapist (OT)'s everything and nobody can give me a straight answer. I'm feeling defeated and sad because I just want others to see the sweet person that he CAN be, but he's not able to show that side to most people. I'm at a loss. I've been googling Conduct Disorder and getting very depressed. Anyway, whatever you can all offer would be most appreciated. thank you!!!!!!
     
  2. runawaybunny

    runawaybunny Administrator Staff Member

    Hello @caetlin

    I'm so sorry you are on such a difficult parenting journey with your son. You have done a wonderful job of seeking out professional advice and guidance. It's too bad that they haven't helped you so far.

    The one thing I suggest to you is to take good care of yourself. Take time away from your parenting struggles to do something kind for yourself.

    I don't have any insights or personal experiences that I can share with you so I looked up a few things that you may find insightful.

    5 Foods That Negatively Affect Your Child’s Mood

    Cognitive and temperament clusters in 3- to 5-year-old children with aggressive behavior. - PubMed - NCBI

    The developmental relation between aggressive behaviour and prosocial behaviour: A 5-year longitudinal study

    Cooperative games: a way to modify aggressive and cooperative behaviors in young children

    Conduct Disorder: Diagnosis and Treatment In Primary Care - American Family Physician
     
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I would take him to a neuro psychologist (psychologist with extra training in the brain). They test intensively. He has so many red flags for autism spectrum high functioning, including hyperactivity, loudness and some Obsessive Compulsive Disorder (OCD), that I am almost certain he will get that diagnosis eventually. But it can take time, wrong medications, our bewilderment.

    Teachers, plain thetspists etc. often do not test and misdiagnose it as ADHD, ODD, a mood disorder etc.

    Neuro psychologists can be found at university clinics and childrens hospitals. in my opinion he has too much going on to just have ADHD.

    Good luck!
     
  4. runawaybunny

    runawaybunny Administrator Staff Member

  5. BloodiedButUnbowed

    BloodiedButUnbowed Active Member

    I agree with Somewhere Out There that your kiddo has too much going on to be explained by ADHD. In addition to the neuropsychologist that SOT mentioned, I would also suggest that he receive a complete evaluation from a developmental pediatrician. The gold standard test for autism, called the ADOS, will take several days to complete. As with the neuropsychologist, developmental pediatricians are often affiliated with universities and major teaching hospitals.

    It will likely take this kind of specialist to figure out what is going on with your son.

    Best of luck!
     
  6. litbitblack

    litbitblack New Member

    It sounds like you are doing everything you can as a parent to help your child but don't forget to take care of yourself. I agree with the others it does sounds like its more than adhd and needs further evaluation...
     
  7. pigless in VA

    pigless in VA Well-Known Member

    Welcome, caetlin.

    You know some kids are just loud. I think since he likes kindergarten right now, that is HUGE! Offer to work with the teacher to decrease the volume. Being a cooperative parent will help, but he will probably still be loud.

    My brother in law was so loud that we called him Uncle Boombox.

    I wonder if he could decrease the volume for a new book on trains. Or a new train car. Or a trip to a train museum.
     
  8. susiestar

    susiestar Roll With It

    I would find a children's hospital and insist on a developmental pediatrician and a neuropsychologist working together. You need a strong team approach, I think. You may have to build it yourself, but you seem like a strong mom. Someone who can eventually get her way.

    I urge you to create a Parent Report. It is a report that has all the info about your son in one place. You write it so that you have everything in one place. Warrior Moms who were on this site long before I came her created the outline. It was one of the most powerful tools I had when fighting for the help my son needed. You can find the outline by clicking on the link in my signature at the bottom of this post.

    Don't try to write the report in one sitting. Work on it in chunks. I always kept a photo of my child at the beginning of each section. That way if I gave a doctor a section to read, he had a photo of the child he was reading about. I kept copies of the report with me when I went to see a doctor so that I could let them have a copy for their files. Having a photo makes the information more personal,according to some study I read. It seemed logical that doctors could get patients confused if all they did was read charts without anything to distinguish the patients from each other except names. I wanted my son to be as memorable to the doctors as he was to me. Photos helped with that.

    It is possible that more than one thing is going on with your son. While you are trying to get a firm diagnosis, treating what you see is important. What is being done to help while a diagnosis is being figured out? At a minimum he needs therapy for sensory integration disorder. He probably could use some other types of help, and anything you can to provide interventions early is excellent.

    I always figured it didn't much matter what they called my son's problems. It was how they fixed them that mattered. They could say he had Ham Sandwich Disease and it would be fine with me as long as they made it better and returned him to the sweet boy I had the first few years of his life. You should have heard his doctor laugh at me when I said that! Only I wasn't joking.

    Sure a name helps. It gives you a feeling that you are not alone, that other people are dealing with the same thing. It lets you have a road map to treatment. It tells you what to look up when you want to understand what is going on. Only for most of us the first couple of diagnoses are incorrect. Not because the doctors are idiots (well, some of them are, but that is beside the point!). It is because the patients are children who are still growing and because diagnosis is not an exact science.

    If I were you I would start with learning more about sensory integration disorder if you don't already know a lot about it. If you haven't read The Out of Sync Child by Kranowitz, it is excellent. Then buy a copy of The Out of Sync Child Has Fun, also by Kranowitz, and do the activities that your son enjoys. Why? Because the ones he enjoys are the ones he actually needs for therapy!!! It is good for his brain to do those things!! How often do you get to stop and do something for therapy with you child and have that therapy truly be fun? My family wore out several copies of the book. I swear the kids in our neighborhood had some kind of sixth sense tied to that book because every time I got it out, every kid in the neighborhood showed up in my yard. All ages, not just the ones my kids' ages. We loved it.

    If the Occupational Therapist (OT) you are working with hasn't shown you brushing therapy, ask about it. It helps the body process sensory input in a more normal way. It uses a gentle brush, on the skin or over clothing, in a specific pattern over the body, followed by gentle joint compression. You must be taught this by an Occupational Therapist (OT) or you can cause harm. Once you are taught, it seems incredibly simple. The amazing thing is that it is proven to rewire the brain, to create new pathways for the brain to handle input from the senses. No medication is used, nothing that is harsh or would harm a child. The effects are astounding.

    I know about sensory integration disorder because I have it. It really sounds like your son has it to some degree. I say this because he seems to need the loud volume and to be able to control his environment. The world can be difficult if you have sensory issues because it is always too. Too what? Too quiet, or too loud. Too bright or too dim. Food is too salty or not salty enough. One of my big problems is texture. I cannot stand many fabric textures. The new fabrics that are used for sports clothing? I cannot even pick them up to put them in the laundry. They literally make me shake if I touch them. They are horrible to me. If my clothes itch, there is no way I can wear them. I cannot get used to the itch, or forget about it. It bothers me every second of every minute that the clothes are on. It is torture. Lucky for me, I have a mom who had to wear itchy clothing as a child. She swore her kids wouldn't have to, and she is an incredible clothing designer. She made most of my clothing as a child, and it never ever itched.

    Kids do well when they can. For some reason, your son can't do well right now. It is up to you to get everyone to figure out why. Sensory issues are probably a big part of his problems. My youngest child has sensory integration disorder. Several doctors told me that it is on the mildest end of the autism scale. Not a surprise given the amount of very high function autistic people in my family. Or people with strong autistic traits (not enough autism to be diagnosed, but enough for people to notice it.) It took a few years, but eventually we got him to the point that he manages his sensory needs without anyone even realizing they exist.

    One thing that might help with his volume problem is a social story. You can look up what they are online. Just google social story. You could then find one about being too loud. Or make one with Thomas the Tank Engine helping another train learn to be quieter for some reason. Maybe so the other kids in school could learn? It wouldn't be hard to print out some clip art of Thomas from online and make a book.

    Just a few ideas.