2nd kiddo with same complicated issue, LONG post

Discussion in 'General Parenting' started by Farmwife, Jul 18, 2016.

  1. Farmwife

    Farmwife Member

    Hello folks, long time no see. I’m back for round 2 with my now newly emerging 2nd difficult child. (I forgot all the slang, have to come back up to speed)

    Brief recap, son was an absolute nightmare from 11 through to now, aged 22. Essentially, an undiagnosed bi-polar. I am now seeing some familiar patterns with my 7 y.o. I thought my son was mostly a product of my ex and my issues, combined with his learning delays was a recipe for disaster.

    So, here I am with the same learning and emotional control issues with his half-sister. Clearly it is a genetic “gift” from me. I have a supportive school and insurance so the basics are covered. The problem is finding where to start. I was hoping parents with similar difficulties could shed some light on what may be the underlying issue. Without a direction it is very hard to get the help. It seems as if finding the cause is the biggest part of the battle because so many of these situations are not textbook cases and most professionals are familiar with ADHD and not much else. I’m not asking for a diagnosis, just a clue to help approach the right experts.

    Most important part, I do not want to medicate my child unless absolutely necessary after all other solutions have been exhausted.

    Behaviors/history:

    *Emotional stuff: First two years of life exposed to first difficult child’s outbursts. Did witness a particularly bad physically violent incident at a yr old, police came. (alternate living arrangements were made at that point for oldest child) Had night terrors and sleep issues until the youngest shared a room with her. Also, has had to live with a mostly depressed Mom while oldest is in and out of our lives.

    She is an emotional kid and always sort of moody and negative. Just hard to please I suppose.

    *Learning stuff: Perfect copy of oldest child. Speech delay from early on. Had early intervention services for speech. Still has a speech delay after first grade but most people can understand the majority of what she says. Is still getting some speech help at school. Unfortunately the speech delay is now associated with her emerging reading/writing problems.

    She is noticeably at the bottom of her class and we are doing our best to nurture her along. She shouldn’t be going to 2nd grade but since she is in a very small parochial school we have some leeway. (13 kids in her class with occasional volunteer tutors) Everyone is concerned about her self-esteem and not wanting to make things worse.

    Behavior stuff: meltdowns associated with school work which we have to do over summer to prepare for 2nd grade. Just like the oldest, she starts homework and very quickly gets frustrated, hits a wall and gives up. We spend the next hour or more with her having a meltdown and like clockwork, exactly like her brother the “blister pops”, she calms down, finishes her work and his happy/excited at her accomplishment. Our biggest obstacle is the inevitable meltdown before she can function, even though she knows the work because she ends up doing it after all. It is somewhat challenging for her but not beyond her skill level, with effort.

    Her ability to focus is minimal. I use funny voices or colored pencils which she enjoys but it only delays the inevitable meltdown. Some of it may be actual laziness too. She just gets so frustrated so quickly.

    We never were able to get the oldest on track and we fought like heck the whole way. It was soul crushing and life sucking. I’m hoping to finally sort out whatever this is.

    My Mom had a slight speech delay as a child but outgrew it and needed no other help. There is a family link, I think.

    So, so sorry for the long post. I wanted to give a clear picture of the situation.

    Any suggestions would be greatly appreciated.
     
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Frankly, id have a neuropsychological evaluation (which is NOT with a neurologist, but with a neuropsychologist). They are the gold standard at least in the U.S. You can find them at university hospitals.

    Nueropsychologists test the child in every area and take about ten hours. Your kids both remind me if my son, who was misdiagnosed with bipolar. Actually the speech delays remind me of high functioning autism. They look ADHD, struggle in life without the proper interventions early on and can get considerably better, but not on bipolar medications or with bipolar treatment. If you want a more accurate diagnosis, which leads to more suitable treatment, Id get an evaluation.

    My son is 23 now and is polite, funny snd easygoing (I never thought I'd ever say this). He is medication free, working, and doing really well. Your son obviously did not get helpful treatment, and its not your fault. But your daughter can be better evaluated and have a better shot.

    Autistic spectrum is so often misdiagnosed. Yet it is treatable and neurological rather than psychological. It also is very hereditary.

    Good luck.
     
  3. Farmwife

    Farmwife Member

    Oh my goodness, this was so helpful and exactly what I needed. The reason bi-polar was the direction Dr's looked at is because of my history. My son recently had a full blown episode which points to mania. He had extreme stress, lack of sleep, poor eating, grandiosity and misc until it peaked with hallucinations and agitation to the max. It was exactly like me at my worst.

    Is that kind of behavior ever associated with the autism spectrum?

    I know he has a fidgeting thing and has forever, he does it faster when agitated. I never even thought about that until now.

    At any rate, going to follow your suggestion. I need to learn more about the spectrum.

    What sort of treatment helped you guys, if you don't mind my asking.
     
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi.

    He could have both too. I hope not.

    My son got most of his help first in speech, social skills classes and physical therapy and occupational therapy, then early special education at age three. He had continuing help all through school. By high school he was behaving pretty normal and was mainstreamed and then school helped get my son a job and services when he graduated. medications never did squat for my son, except make him lethargic and crabby and hungry.

    That type of help can happen for your daughter. Your son can still qualify for community supports/disability.

    My son had rages from hell...until he stopped. Totally. And he was very late in talking and so hyper we always said he hung from the rafters. He hated change and would scream as if we were killing him. He is adopted and he is black and I'm white. In shopping malls, as he kicked me and shouted for help I'm surprised nobody called the cops because it must have seemed as if I was kidnapping someone else's kid...lol. Luckily for me, there were no cell phones back then.

    I stopped taking him to the mall!

    He is one of my heroes. He was diagnosed as Autism Spectrum Disorders (ASD) at age 11 qland his whole life changed as soon as the school got the right diagnosis and he was weaned off the medications. Your kids may need medications. Mine doesnt, but they sure put him on a lot of them.

    His psychiatrist continued to insist he had bipolar even when I told him that son was doing great on no medications and had no more mood swings. I think the medications caused the mood swings in our case. Remember, all kids are different!
     
  5. mof

    mof Momdidntsignupforthis

    So hard she is young...I have twins, had speech til 13, occupational therapy for years..delayed in school as well. They have caught up in high school...but it's exhausting fighting for your rights for them.

    Insist on getting what is right for her...homework tantrums could go on for hours.

    Never did medications.

    PrAying for answers!
     
  6. susiestar

    susiestar Roll With It

    Some things I would do are first, follow the link in my sig or at the top of the forum and start a Parent Report. It is a report that you write about your child and keep updated as you journey through to figure out her challenges and how to help her overcome them or learn to live with them. It was probably the most powerful tool I had to help my son.

    Second, get whatever referrals are needed to help your child. They can take a long while to process so the sooner started, the better.

    Third, request an IEP from the school. I have no idea how parochial schools handle them as I avoided those like the plague after my experiences with them. Public schools can do MUCH more for a child with challenges as a public school is required by law to provide supports but the rules are different for parochial/private schools. The school she is in may not be best suited for her needs, and you have to evaluate that - it is a personal decision and not one I could dictate.

    Fourth, get her in to see an occupational therapist for an evaluation for sensory integration disorder. It is a component of MANY childhood problems and esp with the fidgeting is something I would check on. It is also the disorder you can do the most for without medication. Read Kranowitz' The Out of Sync Child as it explains it so well. Then get a copy of The Out of Sync Child Has Fun by Kranowitz and take the time to do as many of the activities as your child will do with you.
    When you see the occupational therapist, push her to start brushing therapy with your child even if she thinks your child is on the older end of the spectrum to start. The brain is a lot more able to change and rewire than many people think. Changes from this therapy are actually quite amazing and incredible.

    Children do well WHEN THEY ARE ABLE, not when they want to. They generally want to do well and to please adults. If your child is not doing well in school or any other situation, generally it will be because she isn't ABLE to at that time. Pay attention to if she is tired, hungry, thirsty, overwhelmed, if the room is too loud, bright, quiet, etc... After a while, you will start to see a correlation between her ability to do things and how fast she gets frustrated and her environment. I know that I ALWAYS kept a few dollars and some protein bars in my purse because if I expected either of my boys to be able to go to the store or an activity after school was out, then they needed food. Hungry or after having sweets but no protein, neither of my boys (or my older brother for that matter) was able to behave for long or cope with a store. My youngest had severe sensory issues and we simply didn't go to certain places if he was hungry or tired because he couldn't cope. He couldn't even handle going to school 5 full days a week until 3rd or 4th grade. He would get overstimulated and start to sort of vibrate, I cannot describe it better but than his whole body having a very fine tremor that he couldn't stop. If I insisted he stay at school, he would end up melting down. His meltdowns generally consisted of curling up under furniture or in a closet, shaking, rocking, flapping his hands and chewing on his shirt until the entire front was soaking wet. Be 2nd grade he would just shake and chew his shirt and not respond to anything at all other than his older sister or I. She was a total sweetheart when his teacher would have someone call her out of class because he wouldn't respond, but I hated to push him to that point. So if his teacher or I thought he was overstimulated, he stayed home. He was always at the top of hsi class academically, even in the years he only went 3 days a week, so no one fussed about his attendance (thankfully). I was a stay at home mom because of this - someone had to be at home because of the boys challenges.

    I remember being shocked at the first occupational therapy session because before a brushing session, my incredibly intelligent but uncoordinated son was trying to cut on a line and couldn't, and said he was a stupid useless idiot (not language allowed in our home because I think stupid is a far uglier word than the f word and I would rather hear my child use the f word than call anyone stupid). A short brushing session and he could not only cut on a line but his writing was almost readable and he felt much better about himself. It wasn't that he was saying nicer things - I could see he truly felt better and had more coordination. I cannot even begin to express the difference this therapy made for him and it involved zero medications and zero yelling or screaming or fighting. Even kids who don't enjoy the brushing enjoy other aspects - kids are drawn to certain activities and those are the ones that end up helping them. Activities from the book that thank you didn't like were ones he didn't have to do, because they didn't help. But the enjoyable ones oddly enough helped him learn to cope with the sensory input that overwhelmed and overstimulated him. The activities make up part of a sensory diet and they help reset a child's ability to cope. Many schools here have areas in the room where kids can take sensory breaks. It looks like playing but really is an important part of learning.

    For your daughter, is writing a problem? If so, consider doing math with manipulatives. She works out the problem with beads or cheerios or raisins or m&ms, and you do the writing. So for a problem like 2+3, your daughter would set out 2 cheerios, 3 cheerios, and then a pile of 5 cheerios, and you would write it down for her. Even if you have her doing the writing, using manipulatives can make homework faster, more educational, and vastly less frustrating. Or, if she is overtired after a long day of school, tell her teachers that homework is not worth the fight and should be off the table. Some kids just cannot take more school after a long school day. Do assignments on the weekends with her, or simply urge the school to eliminate the requirement for her. They can grade her on her in class assignments or get her an aide to work in class with her. Also let them know that keeping in from recess is just not an option as she likely NEEDS that time to run and play and not be doing classwork. Taking recess away generally lowers grades across the board, for all students. So teachers who keep kids in to do homework are actually not helping, and there is good research to back this up. Kids learn far more from play than from homework, esp in the lower grades.

    If you decide to evaluate other educational options, look to see if there are montessori schools in your area. They often do FAR more for kids with challenges than other schools do. I have heard great things about Waldorf schools, but my experiences were not good when we evaluated them. Not every child can learn in a traditional classroom, esp if they are very strict about work on paper, sitting in desks, etc... It is something to evaluate for your family and child.

    I hope some of this helps. Take what works for your daughter and family and ignore the rest.
     
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  7. Farmwife

    Farmwife Member

    We have been lucky with the parochial school, very lucky. We live in a rural area so many of the staff have or have had their kids or family members go to school there. My daughters first grade teacher was my husbands first grade teacher too. It is one big extended family. The teachers and I often communicate by text. ALL of the kids have impeccable manners and are closely cared for.

    The public school, only one in district is ridiculously overcrowded, classes with 30+ students. There are 2 to 3 classes for each grade. Plus, she would likely get teased mercilessly. School sucks when you are different. I'm afraid she would get lost academically in a sea of kids.

    We actually do have an iep and it is set up as much as is possible at the public school, within their abilities. The speech teacher is young/inexperienced. They meet twice a week for 20 minutes and I am happy with that. This district is notorious for crappy services. After serious battles for the oldest I know what we do get is as good as it will ever get.

    On the plus side, due to class size the parochial school kids are always ahead of the curve. Once they transition into high school they are almost exclusively in AP classes. So, she wouldn't be bottom of the heap at public school. I am thankful for that.

    Thank you for the idea to keep records and a journal. Sometimes there are so many details that it's hard to keep it straight.

    I also like the idea of trying to switch things up. I'm just afraid to take sanity breaks because we could start over with a second meltdown. Her work load is short but she makes it so much longer than it needs to be.

    Edited to add: do doctors actually take the time to look over such detailed documentation?
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    in my experience at least with neuropsycologists, they handed out their own forms for us and for school to fill out. I didnt give anything and dont think they would have read them, but all professionals and school districts are different.

    In the end, my son got ten hours of INTENSIVE testing that went way beyond IQ and ADHD. Although ny son was very hyper-hyper at one time, he was given a computerized test for ADHD and passed. Other reasons were given for his seeming fidgets and inability to sit still without picking at his skin or jiggling his knee. That was a relief because I did try ADHD medications out of desperation (although I hate putting childen on medications that so many teens abuse) and also I felt they made him whiney and crabby and he really isnt like that. The psychiatrist we had thought he was God Himself and would not admit that the stims made him worse so I made a Mom decision and stopped them. Psychiatrists do not normally get autism because it is a neurological difference yet the behavior can pass for psychiatric problems. They seem to be more interested in saying "bipolar" and prescribing medication for that and ADHD because they are comfortable with that too. More medications!!!

    My poor son.

    My son did much better in public than parachial school. The learning pace was too fast at the parochial school (although his IQ is normal, his processing time is slower) and there was no aide to help him catch up.

    He literally zoomed ahead in a Special Education class in public school in fourth grade. He was the leader in the class and very respected. He was in Special Education for reading and math and in regular classes otherwise. He loved school and made friends, some who were kids in regular classes. He never got teased.

    In Catholic school he didnt get teased, but nobody befriended him either and he was alone at lunch and recess.

    Our school only had 100 kids in each grade, but I fought very hard to get him every single bit of help I wanted him to have and we won. I had to laugh when one teacher told my daughter,"Nobody wants to talk to your mom.She never backs down "

    I didnt when it came to my kids and I got advocates and was ready to take them to court. it was all worth it.

    That is my story. I know you have to make your own decisions. Praying for a happy ending for all. it can happen :)
     
    Last edited: Jul 18, 2016
  9. culturanta

    culturanta Member

    Parochial schools are not obligated to offer special needs children the supports and interventions they may require. Public schools do operate under that obligation - if you take public money you must comply with public laws. It all depends on the situation, some children are able to succeed with fewer supports, others are not.

    I would agree that a neuropsychologist evaluation of your daughter would provide many of the answers you seek - of course, could also open many new questions, but if ultimately she gets what she needs to succeed in life, that's all that really matters in the end.

    Neuropsychs can take MONTHS to see due to backlog, so if it was my child, I'd call the elementary school district to which she is assigned (even though she attends a private school, she is still their responsibility legally) and ask for them to open a case study evaluation (an IEP evaluation) due to the concerns you mention above. That might prove a quicker solution and would not cost you or your insurance a cent.

    Good luck!
     
  10. susiestar

    susiestar Roll With It

    One psychologist we adored read it all. She is the one who got the 1500 page entire psychiatric hospital file for me also. Technically she was not supposed to pass it on, but they wanted 75 cents per page and it was ridiculous. I wanted to know what had gone on there.

    What the PR did was let ME find the info in a few seconds where my memory could be spotty when asked if we had done this or that. The report also let ME keep up iwth the current problems and with past ones that had yet to be addressed. It took time and I loathe paperwork, but it was well worth it. I did keep sections on medication lists past and present, etc... When we settled into a child psychiatric/developmental pediatrician, I made sure he had a copy of what we had to date and I insisted he read at least the medication section, testing results section and the section on who he was to me. I actually sat there as he read it because past doctors had clearly lied about reading it. I paid for his time and insisted that he read it - I felt that was fair and after explaining it, so did he. Of course he was not a big ego jerk like so many of the docs we saw, which helped.

    I am glad your parochial school is vastly different than the ones where I grew up and where my oldest 2 started school. I have yet to be in places where intelligence was less respected or bullying was more an avocation of the adults as well as the children. Sure, being smarter than my teachers didn't ever make me popular, but the area we now live is far more tolerant and accepting, and the few adults who are in the schools for the sake of the power they can wield over kids just don't last long here. At my parochial school growing up, that is the main function as near as I can see. I even decided I had been too hard on them and went to interview them to see if I wanted my son there. I had never seen more miserable children in my life - because unless they were ostracizing another child or being mean, they were in trouble. I still ahve not seen or heard of such cruelty. It was a nun who gave me my first ugly taunt, and I was sad to see other nuns being cruel to children when I went back to inspect the school. So I am THRILLED your school is far different!

    I do strongly also suggest that each doctor has a photo of your child in the front of the file - ask to see it at visits. It is a tip that has been proven to help the doctor keep children straight even if they don't want to admit it.
     
  11. HopeFilledMama

    HopeFilledMama New Member

    Everyone has had great things to say and suggest.

    One thing about homework. My son has huge issues (you can read the layers in my siggy) but I would break the homework up in small bites. (and eventually had abreviated assignments mandated in IEP) Gave him a short break for a preferred activity and then continue with assignment. I used timers. Totally ended melt downs. I'd start with very few problems before preferred, and then gradually increase the amount expected in between preferred activities. It worked for us.
     
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