Afraid I'm looking at a long road ahead . . .

Discussion in 'General Parenting' started by HosLaw, Oct 4, 2013.

  1. HosLaw

    HosLaw New Member

    My wife & I adopted our son at 2 days old. He just turned 5 on 9/11/13, and is an only child.

    He was about 4 weeks premature, and tested positive for stimulant exposure, but showed zero signs of any effects from it at birth, and thereafter.

    He was the perfect infant:
    • Slept through the night at 3 weeks old,
    • Ate a wide variety of food, regularly, without trying to overeat,
    • Developed on target (other than being a little small, because of being premature (he's up to size now)).

    As a toddler, he was 1,000% "boy" - always on the move, a total Tazmanian Devil. Always happy.

    He has always been extremely verbal (even more than any girls we've seen), and very bright (hate saying that as a dad, but I promise "its not just me" saying it). He's the total "class clown" type, despite not being in school. He is the most fearless, gregarious kid I've ever seen. He walks straight up to kids he doesn't know on the playground and will organize them into some sort of game. He is very physically agile & strong as well. He loves our 3 dogs, and 1 cat, and 1 horse. His favorite thing in the world are sharks - he listens intently while I read non-fiction books about sharks.

    My wife & I are both professionals, and have lots of very accomplished, intelligent friends - some with kids of their own, some without. They all think that other than being 1000% boy, that our son is amazingly bright, charismatic, and a total charmer. They don't get to see what happens when he's NOT in a fun, social setting, however.

    Now the bad.

    Since 3, we've essentially been waiting for an "ADHD" diagnosis:
    • He never stops moving - you have to physically hold him to get him to stop moving. Its not involuntary, or a tick or anything like that. He just NEVER STOPS.
    • He only stops talking when he's engrossed in something he enjoys. Otherwise, he's a chattering little monkey. He's smart - he'll ask a non-stop stream of questions about what I'm doing, showing an understanding of what I'm working on well beyond his years.
    • When he's stressed, or tired, he still sucks his thumb.
    • He will destroy just about anything, once he becomes bored with it. This has included an iPad, an iPhone, most of his toys, etc.
    • He only focuses on things that he enjoys - TV (of course), legos, books (looking at pictures & making up stories) - anything else, its like dealing with a caffeinated spider monkey.

    He started a Transitional Kindergarten program in August (2 months ago) at a public school. Transitional Kindergarten is a 2-year Kindergarten program for kids who would otherwise be the youngest kids in their class - the equivalent of holding him back a year, to make sure he's mature enough to keep up in standard Kindergarten.

    In the last 2 months, we've had the following problems with him at school:
    • He hides under tables or behind bookcases anytime he doesn't want to participate in the class activity.
    • He runs out of the room anytime he is told he can't do what HE wants to do (versus what the class is supposed to be doing).
    • He has bit his teacher once (when she was trying to call the Principle to come get him, because he was being disruptive).
    • He has stolen "Mountain Lion Notes" (tokens the kids receive for being good citizens that day - redeemable for a treat when they accumulate 10) when he's told he hasn't earned one that day.
    • He has thrown chairs, tables, stuffed animals, books, or toys when he has gotten frustrated. He doesn't throw them AT anyone, just throws them randomly. Unfortunately, he has hit a couple other kids, and the teacher, during these episodes.
    • He has refused to participate in group activities, instead wandering off to "read" by himself, play in the mock-kitchen, or simply lay down & pretend to sleep (complete with snoring).

    His Kindergarten teacher is actually really good with him. She was frustrated & aggravated by him for the first week or two. Now, she actually really likes him, but she admits that in 23 years of teaching Kindergarten, she has never seen a kid like him: she's had a kid with legitimate psychosis (who heard voices), lots of ADHD kids, and even some ODD kids. Her assessment is as follows:
    • She believes he is exceptionally bright,
    • He is above "grade level" in most of the assessment areas,
    • He doesn't have rage or anger issues - instead, he simply knows what will get attention & keep him as the center of attention (she says this because he can "turn it on & turn it off" on a dime - even in mid-sentence - if some alternative that he likes is made available).
    • She thinks he does fit the "ADHD" criteria, but isn't a run-of-the-mill case. She has no idea what, if any, the "comorbidity" issues may be, but she doesn't believe he's ODD - mainly because she believes he can control his conduct & emotions - she thinks he CHOOSES to act that way, as a means to and end.

    The first time his teacher tried to assess him, he just said "I don't know" or made up gibberish answers to every single question. She told us that if she just scored the results & moved on, he'd definitely be classified as "developmentally delayed". So, in order to actually assess him, she had to take him to the playground 1-on-1 with a bag of Skittles. She would let him play for 2 or 3 minutes, then call him over and tell him he'd get a Skittle for each question he could answer correctly. He would then proceed to ace several questions, getting a Skittle for each one. When she could tell he was starting to lose interest, she would tell him to go run & play by himself for a bit longer. Rinse & repeat. He then scored "Above Grade Level" on almost everything, and "At Grade Level" on the rest.

    He is an enigma, wrapped in a riddle.

    He has seen all of the following:
    • Pediatritian - same one since birth. She finally gave a formal diagnosis of ADHD about a month ago (after the first month of school).
    • Family friend who is retired from the Gesell Insititute of Child Development (, about 2 years ago, when he was about 3 years old. She actually thought he wasn't ADHD or ANYTHING: "he's just a really, really rambunctious boy - he'll probably grow out of it."
    • Pediatric Neuropsychologist (about a year ago). At the time, she said he was too young to diagnose with anything, but she ruled out Autism spectrum (including Aspergers), sensory integration, and developmental delays.
    • Child psychologist - about 3 weeks ago. He assessed him for about an hour, but if our boy said "I don't know", or answered in gibberish, he would just move on. SO, he though he had developmental problems. His recommendation was that we need to work on his learning to read much more aggressively, and instead of raising our voices when he acts out, try to "negotiate" with him, so that we show we care about him & his needs.
    • Psychiatrist. He won't give a diagnosis apart from the ADHD diagnosis that the pediatritian gave. BUT, he wants us to put him on 1mg of Abilify (1/2 of a 2mg tablet).

    The school is in the process of putting together an IEP - we meet with them again on 11/18/13 to hear their plan & either approve or disapprove it.

    I would love to hear any thoughts. Before we went tot he psychiatrist, I had brought myself around to the possibility of a stimulant medication, for the focus & attention issues (hoping that the acting out issues would resolve if he could settle down & focus on the class's task of the moment). But, when the psychiatrist came back with Abilify (which I had never heard of), and I read up on it . . . I am SCARED TO DEATH to put a 5-year old on something like that unless I'm 110% convinced its necessary . . . and thus far, I'm not.

    PS - If I left out any information, ask - I don't know what may or may not be relevant. I'll clarify or add anything that would complete the picture.
  2. Confused

    Confused Guest

    Welcome HosLaw. Thank you for the information and others will be here soon. Im still trying to figure out things as well so I do not have great advice. The teacher was wonderful to test him the way she did, maybe if he is getting bored after he does his work, she can give him a grade level up?

    You have been lucky to go to all of these evaluation/doctors but make sure you keep them up. The best thing I can advise right now until a better diagnoses comes along is the Social Skills/Therapies that be can given. Also, make sure he is in sports, swimming Gymnastics, something to help him burn some energy!

    Most Dr's wont give an official diagnoses with full treatments until the age of 7 which is my problem.. well some of it. Others here know so much more on therapies, disorders, tests than I do. Same as medications. Make sure you have his health checked out.. further testing like thyroid levels, food allergies and various other issues just to rule them out. I hope you all get some answers quickly. We are here for you all :)
  3. InsaneCdn

    InsaneCdn Well-Known Member

    <sigh> welcome to the club.
    Mine are teenagers now... but I do remember!

    You may have to take an opposite approach to getting dxes... start with the details: has he ever had an Occupational Therapist (OT) assessment for motor skills and sensory issues? An Occupational Therapist (OT) is usually better able to evaluate those two areas, AND has therapies and interventions and accommodations that really work. PLUS... an Occupational Therapist (OT) report is taken seriously by other medical professionals.

    A kid can be highly athletic, and still have fine motor skills problems.
    They can be really bright, but have auditory processing challenges that make it hard to cope with the classroom environment (that's over and above any sensory issues...) - but Auditory Processing Disorders (APD) testing won't be done before at least age 7

    Have you looked into trying some of the basic dietary changes that help some of our kids? (not mine... unfortunately) some of the common ones are:
    - casein free (CF, dairy-free)
    - gluten free (girlfriend)
    - food colorings and dyes

    What is the quality of his sleep like? not quantity... a kid can get 10 hours of "sleep" and not get anywhere close to the "restorative sleep" necessary to cope with life.
  4. Malika

    Malika Well-Known Member

    Hi HosLaw and welcome to the forum. Well, I can tell you that in many respects your son sounds extremely similar to mine, also adopted as a very young baby. Not in all respects, of course - my son definitely has a problem with rage and anger, and can be explosive. I would say he does also have some form of sensory problem just in that he is really sensitive to seams in socks, things that rub against him, loud noises, etc. Like yours, however, and particularly when he was younger, my son was very bright, charismatic, engaging and also difficult to handle in many settings. The wandering of by himself when in group settings was identical to your son. For ages people agonised over a diagnosis for him... basically I and the professionals hummed and hawed because of various factors (eg he "concentrated" too well, etc). He is now nearly 7, has received two ADHD diagnoses and clearly fits the bill. In his case, and without wanting to depress you, obviously, the symptoms and the ADHD-ness have actually got worse and more evident with time. He is hyperactive, very impulsive and his attention capacity has decreased. He somehow manages at school though he's had rather an odd school career. He chatters non-stop and much of it is engaging, funny "nonsense" that bears no reality to the known world :)
    So where does this leave you? I have so far resisted ADHD medications (apart from a disastrous 2 day experiment with a Ritalin variant, with horrible side effects) but I think remain open to them in the longer term. I feel you are right to be very cautious at this stage and at the age of five.
    Have you thought of, and would it be financially possible for you to consider, an alternative school? One of my regrets - there are always regrets, right? - is that I did not put him in an alternative school from an early age.
    Just a few thoughts... really nobody can diagnose over the internet and it's a dangerous practice, but your chap does sound very like ADHD or something... and the something could be fetal alcohol effects, for example. With adopted children there are so many unknowns. One last bit of advice I would give is that I would try to seek out imaginative, human professionals who can see the qualities and brightness of your son.
  5. DaisyFace

    DaisyFace Love me...Love me not

    Hello and welcome!

    My son was just as you've described at that age. Yes - ADHD (emphasis on the "H"!). Like yours, my son was not mean or angry, just incredibly impulsive.

    We did not ever medicate him. We felt the risks outweighed the benefits. That does not mean I am against medications, it just means that I didn't feel it was the best option for my child.

    What worked best was: getting a good IEP and getting teachers that followed it, LOTS of exercise and activity, "gifted" classes that challenged him.

    DON'T let the school bully you into medicating if YOU are not comfortable with it.

    DO insist that you child gets accomodations to allow for activity and movement. There are hand toys to fiddle with, bouncy cushions to keep a child in his seat while still allowing him to bounce and move, active classrooms that allow plenty of walking/moving around instead of always remaining at a desk, etc.

    DO have plenty of patience. Repitition is key. Even if the conscious mind is very distractable - the subconscious can learn routines. So if you want the child to develop a routine for getting ready for school (for example) - you'll want to perform the same activities in the same order every day. First we use the potty, then we brush our teeth, then we wash our face, then we brush our hair. You get the idea...

    Hope this is enough to get you started!
  6. HosLaw

    HosLaw New Member

    Thanks to you all so far. Here's the "more info" I obviously forgot:

    • Soccer at age 3 - would just run around doing whatever he wanted to do (pick up bugs, pick dandelions, try to dismantle the little goals, or pick up the ball and play "keep away" from the entire team & coach).
    • Gymnastics from 3-present - has "good days" and "bad days". He's very good at the exercises, when he cooperates. Other times, he'll just lay on the floor & roll around like he wants to take a nap. Still others, he'll run off to an older group of kids to try to join their activities - he has run across the big open floor area where the big-kids are doing their routines & almost gotten clobbered.
    • Swimming - took one summer of organized classes at around 3, and from then on has just swam at our home pool every chance he gets. He's a total fish, and at 4 could swim by himself unaided - both above & below water. At 4, he could even dive to the bottom of our 8 1/2' pool by himself to retrieve toys. He loves the water, and I let him swim pretty much any time he wants.
    • TBall - last summer (age 4). Again, good days & bad days. Good days, he could hit, throw, and run with the rest of the kids. Bad days, he's throw a tantrum and sulk off to the outfield, or just sit in the middle of the infield and draw in the dirt. On a bad day, he'd pretend he didn't have the strength to lift the bat, and would just stand at the T, bat on the ground, and stare out at the other team with a smirk on his face.

    I'm hoping to get him back into organized swimming (maybe even a team) next summer, and hopefully PeeWee football the fall after that (when he's turning 6) . . . maybe a good, hard hit might jar his brain back to "normal" [I JOKE, I JOKE!].

    We've tried no (low) sugar, no red dye, no processed food, etc. Nothing has made a difference. One of his best days ever at school was a day that I let him eat pancakes & syrum for breakfast, and then a donut before school - enough sugar to kill a horse . . . his teacher called us that day to tell us he was "the perfect kid" that day and "was the best behaved kid in the class." WTF?

    We haven't tried no gluten or dairy . . . but frankly, milk is his favorite thing in the world . . . I'd be stunned if that was it.

    He eats pretty healthy in general - he loves carrots, and fruit of almost every kind (we called him "our little fruit-bat" when he was a toddler - there were occasions where he would eat so many raw blueberries that his stool would look like purple PlayDoh!).
  7. InsaneCdn

    InsaneCdn Well-Known Member

    Given the behaviours you describe, I'd be doubting CF... I'm CF. Casein causes my thinking brain to "shut down"... I become a zombie. But it can affect people differently. Key words, though: I not only love all things dairy... I crave it, 24/7. A single slice of cheese will shut me down for at least a couple of days... my body loves it, my brain does not. So... just because he loves it, doesn't mean it's good for him. If you really want to know... take him off milk for about 4 or 5 days... absolutely NO dairy (including soy cheese, because it's made with casein). It doesn't take any longer than that to tell.
  8. HosLaw

    HosLaw New Member

    Forgot to answer this. He sleeps like a log. He is in the bath at 8:30, bed at 8:45, I read to him until 9:15 or so, and he's usually out like a light before I can get to the door. He wakes up on his own at about 6:45am. He only wakes up in the middle of the night maybe twice a month on average...and will just wander to our room & climb in bed with us.
  9. Malika

    Malika Well-Known Member

    Yes, that's also like my son - has always slept like a log.
    I am wondering... if I can say... what your main goal in writing about your son is. To know whether he might really be ADHD? To get insight and information about medication? Or just to share (always a necessary thing to offload about our different children... )?
  10. InsaneCdn

    InsaneCdn Well-Known Member

    Stupid question... what does he usually eat for breakfast? Perhaps he needs more of a "major meal" style of breakfast to start his day? Like, a "trucker's" breakfast? (bacon/eggs/sausage, toast or pancakes, hot cereal, juice, milk, etc. etc.)
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome, although sorry you had to be here.

    The fact that his birthmother took stimulants while pregnant is very significant. I also adopted a child who had drugs in his system at birth. It affects the developing brain of the fetus and can cause all sorts of behavioral and developmental issues. I assume she also drank while pregnant. Most birthmothers who don't say "no" to speed and cocaine do not abstain from drinking alcohol either. He probably has issues due to the drug and probable alcohol abuse and that is not so easily treated and may not go away, but can get better with interventions and a person who specialises in kids who have been exposed to substances in utero. Personally, I feel the educators have no clue. That isn't their training. I wouldn't pay attention to their diagnoses or opinions. I would take him first off to a neuropsychologist who will test from 6-10 hours and not do so much guessing. Our adopted kids, who were abused even before birth, are different from somebody else's biological child who was not exposed to bad substances as their brains developed. Your son is so young that any diagnoses could be wrong and any ruled out diagnoses could actually be the diagnosis. We went thru this. Or he could have fetal alcohol affects, which mimics ADHD. These kids are very hyper.

    Do you have any history (psychiatric/neurological) on the biological parents? DNA walks with them. As the mom of three adopted kids, you will probably find that they are more like their bio. parents than you, no matter how you raise them, and that they have many inborn traits that you have to learn to embrace. I have heard over and over from adoptive parents who have met their children's birthparents, "I can't believe how much he/she is like his mother/father. He even uses WORDS in the same way as her/him."

    It is often a difficult road to diagnose adn treat an adopted child who came from a less-than-wholesome background. I had to really keep at it to get to the core issues of my son. It turns out he is on the Autism Spectrum Disorders (ASD) spectrum. It is common for drugs in utero to trigger forms of autism, even if the children seem bright and sociable. They tend not to be able to perform in school the way we expect them to. They may try to socialize but don't intrinsically understand how to do t his. For example, the child may pop into a strange child's face a nd start nonstop talking in a loud voice, startling the chld, or be unwilling to share and then cry when the child leaves. These social skills need to be taught like a regular topic, such as history, as the kids don't "get it" nor learn by watching. They are wired differently, in part due to birthmother's irresponsible behavior.

    To me it sounds like you have a child who is a "normal" for one who has been exposed to drugs in utero. They tend to be hyper, unable to conentrate, have learning differences, show signs of both ADHD and Autism Spectrum Disorders (ASD) and often also show VERY erratic emotional liability. They have a lot of trouble controlling their emotions due to their executive functioning skills being compromised. But you won't know your own child's particular issues, or the best way to help him, until you go to a neuropsychologist (best option if you live in the US) and have him comprehensively tested. School testing is not comprehensive enough or done by the right diagnosticians. Pediatricians...this is truly out of their field. They do stuffy noses and other childhood illnesses that you can see, not the invisible childhood disorders that require much more testing. Talk therapists and popular parenting methods don't work with our differently wired children.

    They do not outgrow this. They can get better with interventions, often done for free at school. Some need medication to be able to STAY in school. in my opinion though I'd stay away from ADHD stimulants for this child who already had stimulants poured into his body.

    It was as long, tiring road to solve the puzzle of my child, but it was worth it. Today he is 20 and happy and living a good life. He isn't a college grad and this may not be what we wanted the most for him, but he is loved by all, has no temper outbursts (yes, they can continue into adulthood) and is a very hardworker and extremely sweet.

    There is no such thing as "all boy." All boys are different. Most do not throw chairs and hurt other kids. My son did before we got him interventions and yours is doing it too. Since he is young, this is the time to take a lot of action outside of just your own house. These kids need a village.

    Hope this helped.

    Glad to have you joining us :)
    Last edited: Oct 4, 2013
  12. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Sounds like Kindergarten with my extremely ADHD son. My middle son had been hyper from the day he turned 15 months old. He literally went overnight from a very active but perfectly mannered baby into this nonstop whirling dervish. He was never mean, was always the class clown but couldnt sit still if you gave him a million dollars.

    I remember in Kindergarten his teachers told me they had no clue how he was learning because he walked circles around the room but when asked questions about what they were learning, he could answer them perfectly. Now he had a harder time in 1st grade because he was expected to actually sit in a chair and do work. They only got recess for a little bit after lunch and then again for another 30 minutes at another point. That was simply more than he could take. He came home miserable every day asking why anyone would want to sit in a chair all day when there was a whole wide world out there to play in.

    We did have him on ritalin beginning in Kindergarten. It didnt work well until halfway through second grade when a light bulb went off in his brain. He finally figured out why he was in school and from then on he did well with schoolwork but he was still a very active boy. He played three sports a year and spent almost all his time outside. Luckily we live in the country and I could open the door and let him just go play.

    Fast forward and my little hyperactive son joined the Marines and could stand completely still at attention. I have to tell you that was the first thing I noticed at his graduation. He wasnt moving at all...not even a blink. He later told me he learned to wiggle his toes in his boots to relieve that need to keep moving. He did really well in the Marines. Now he is doing a job he loves. He works for the sheriff's dept in the animal control unit. He has a job where he is outside almost all day long. Yeah he has to do some paperwork but he has grown up enough to manage.

  13. busywend

    busywend Well-Known Member Staff Member

    2 things come to mind reading your post.

    1.) some of the things you have written are totally normal for a 5 year the dandelion picking at soccer. Normal. Be sure your expectations are not too high.

    2.) Do NOT give him Abilify. This is an Anti Depressant or at least used with an AD for treatment of depression.
  14. Malika

    Malika Well-Known Member

    MWM is right. What happened to this child in utero is significant. It may well not be ADHD but something that mimics it. That may also be my son's case but because it's all so identical to ADHD, we ride with that. The advice about Ability seems right - sounds like irresponsible prescribing.
  15. Liahona

    Liahona Guest

    Something that works for a friend of mine is to work on helping the symptoms even without having a diagnosis. You and your wife have learned how to manage him at home, and he thrives that way. The school would do well to mimic what you do at home. So, you might have to teach them. Sounds like his Kindergarten teacher is a good one who would be open to suggestions. What are the kind of things you would do to manage him if you were her?

    *And welcome!