hi there! I'm so glad you found us. I too am an adoptive mom with a son who has multiple behavioral and learning issues. It can be overwhelming to get all this advice and let me tell you first, the guilt thing??? We have probably all been there (and I have thought just recently, why the heck did I take time off of Occupational Therapist (OT) and Speech Language Pathologist (SLP) when he was in fourth grade?? did that ruin things??, but I made the call at the time for other reasons and no way to second guess that ) the guilt is a waste of time. We can only do the best we can and we are human. Guess what? I have yet to see a parent who posts here frequently NOT say they have lost their cool at times. We are human, not super human. Compared to most parents??? We tend to have extra ordinary patience and problem solving skills in my humble opinion.
In regard to comprehensive testing (when we say that we mean like a long evaluation sometimes a long day sometimes a couple of days with a neuropsychologist or a developmental group like a developmental pediatrician who works with team members (sp-lang, Occupational Therapist (OT), PT, psychiatric, geneticist, etc...) or a child development clinic.....), there is no ONE way to do this and because it can be a long process it is often helpful to get your own Occupational Therapy evaluation and Speech/Language Pathology evaluation because 1. subtle issues in these areas can make a child look like they have adhd or ODD or other conditions 2. Other conditions often are associated with problems in these areas 3. The results are more comprehensive than motor or sp/lang parts of comprehensive evaluations so you can bring these results to them to use to help the comprehensive evaluation professional in their process and finally 4. you can begin therapy in these areas regardless of a diagnosis (though insurance may need some form of diagnosis and that is where the other doctors can give you a "place holder" diagnosis like adhd or ODD or whatever...just dont hang on to them as the be all end all labels--they are just for purposes of getting therapy sometimes).
Things to learn more about include Sensory Integration Disorder (try the Out of Sync Child) and Auditory Processing Disorders. My son has severe language processing problems (for him things register seconds later than most and he can't handle long sentences and directions yet, because he doesnt realize it at times himself he just acts on the info he gets and it looks like he is being defiant or uncooperative or rude). He also has a form of auditory processing disorder where information coming into one of his ears is not understood by half of his brain so things can get quite messed up. A typical hearing evaluation does not look at these issues. It takes a specialized audiologist and many audiologists told me that since he can tell the difference between pairs of similar sounding words in their lab conditions where they add noise to the head phones he didn't have the issue (but I am a sp. lang path and had a lot of training in audiology so just smiled and went to the one place around us where they have the proper equipment and tests available.)....it is a long process and do not feel like you are not doing well. Let me say, even if you get a bunch of tests now??? you will likely need to update and try again over the years and things uncover themselves, things get better, things change. It is ongoing, so dont be hard on yourself and dont worry if something they say doesn't sit right with you.
You asked if this is just how it goes for adopted kids. No of course not all, but if you have a child who is starting to show issues and has a risky history like ours, then yes....and getting them very young is no escape from that unfortunately. But they are still lovely kids and have a great chance at a wonderful life. We have to adjust our dreams for our kids, but we still get to have big dreams for them! There is a book called "you will dream new dreams" I cant remember the author but it is about what parents go through when they have a child with special needs.
When we have children with needs that affect behavior an added component of people not understanding and not being very sympathetic is there. Often we are blamed for not having good parenting skills but typical parenting methods frequently do not work well with our kids. I too found the Explosive Child book harder to apply when my son was young...though there are sections on this site where people adapt methods to early childhood and you might search for those. Another book that looks more at early childhood in parts (according to the author, I admit I didn't buy this one but it is on my list) is What Your Explosive Child is Trying to Tell You by Doug Riley. He has actually posted here and there are good sections if you search his name. That might be well worth it for you.
I have had worthless neurologists and one amazing one (she is a special needs mom) and when it comes to drug exposure and alcohol exposure there are medical conditions and features in SOME kids so they can be of help for that but it is not ruled out as a syndrome if the only symptoms are behavioral and that is why a neuropsychologist is so important. They are highly trained psychologists who have extensive training in how the brain works in relation to behaviors. They can help sort our neurological and developmental problems versus mental health problems versus situational problems or the combination of these issues. (of course there are always good and not so good neuropsychs too, I just met a mom who had a lousy neuropsychologist evaluation...total waste of time, we have had several and some were good some were not so great and they were at the same university...it was the "update" appointments that were not so great. They do testing from many fields and can see the big picture better than most. They do not do in depth testing in each area (other than IQ) and I have had situations with my own clients where they would say they didn't have language issues because of the limited number of questions on their broader tests. Some of the more subtle things need a specific in depth test to rule it in or out--and to be frank--a therapist who "gets" it as TeDo said! I ask specifically for only therapists who have worked with kids like mine if I call a clinic. If you are in bigger metro area, or have access to that, then you can do that more easily.
Sorry this is long but other things you asked about...
EEG, sounds like the risk is low for you but also remember that unless a person is having a seizure at or around the time of the test it may not be picked up. The EEG can register if there is a physical abnormality in some cases (like in the area where my son's brain mass was there is a change in waves but it is not a seizure change). I felt my son was having seizures for years. We went to a nationally known in patient clinic and they did not find it. A few years later when with the great neuro we have, he went to a specialty in patient hospital and they really listened to his issues and did not stay stuck in his medical history. They added leads and found he was having seizures all day and all night frequently. Poor kid had been treated for a psychological issue and was taking medications that actually made him more aggressive and crabby for years. He was at a point where he was saying...Do I have to die to get rid of this feeling??? It was awful.
Regarding medications: The medication you are using for my son (and every kid is different, just sharing so you can see there is a process and options) did not work well for him but traditional ritalin did work well (he was four at the time) and it was dramatic. Day one he sat in school for a story for the first time in his life. Was he suddenly normal? NO but it put him in a place where they could start to work on things. I have always felt though that it made him a little more crabby but for him the trade off was too good to not use it (he is so impulsive it is dangerous, he doesn't even sit and eat without the medication). He now uses Concerta and as he has gotten older we just recently have had to lower the doses which is great!
That medication did not help with the aggressive/oppositional symptoms though. The class that helped with that when he was young (and still does but we had to add others now that puberty hit) was like Tenex. My son uses Clonidine and we use it in patch form so it is on board even at night and when he wakes in the morning. That patch changed our lives! he started Clonidine even before I adopted him. (ps. he has been off Clonidine at times in his life and we did try Tenex but that form didn't work, see what I mean...just because one doesn't does not mean the whole class doesnt but sometimes it DOES so it can be quite a ride. Start now keeping a life long journal for medications because you THINK you will remember but when she is 13 you will say...hmmm that sounds familiar and you can then look back to see how it turned out) Another class that is often helpful for our kids with behavioral issues in the seizure medications even if there are no seizures. They are medications that cross over and some are even used for bipolar disorder so you may be asked about Lamictal, Depokote and many others in that class. Aytipical antipsychotic medications are also used for kids with behavioral challenges so you may at some point be asked about Risperdal, Seorquel, Zyprexa or others. Feel free to post here and ask about a medication to get stories but as with everything, there are those where it works great and those where it is awful, it is nice to know what to look for though and often even the doctors dont realize the impact some of these medications can have (or they minimize it).
There have been a few medications that caused sudden increases in behaviors and it was scary (for him Risperdal and Seroquel were awful) and some that over time I noticed the behavior problems increase (prozac and other ssri medications). In the end for my son we had a test done that showed he had an enzyme problem....he had almost none of two enzymes that are needed to process several drugs and it can cause him to overdose at normal doses of some medications and to need more of other medications. If over time you see she has strange reactions to medications it may be worth asking for a test like that. Kids in general respond differently to medications and for my son even if he can use a medication we start it at teeeny amounts and increase MUCH more slowly than typical (like we get it in liquid form and use a dropper to give it...painfully slow but it ends up working for us).
No matter the "diagnosis" (which can be very useful for sure but if you dont get one or it is not complete in your gut estimation) what most of us have found is that figuring out what triggers our kids, what skills they need to learn, what problems (like sensory issues) are making things more difficult, etc. really is the bottom line.
It helps with many of our kids to have a fairly unshakable routine. If there is to be a change in the routine then make sure they are prepped ahead of time in some way (sometimes not too far ahead of time because they can get anxious about it). For little ones a picture schedule helps. you can use pictures with velcro on them and put them in order, taking them off as they are done (which lets you switch them around if you need to change the schedule). Anything you try may seem to make things worse at first until it is routine. Many explosive kids rise to the level of energy around them so if you are angry (and i GET IT!!) they can match that and it is harder for them to turn it around.
OK I will only add one more thing. I wish I had started this far far earlier so I am sharing it now. Remember I said I am an Speech Language Pathologist (SLP)? I was taught to be pretty traditional and data driven (meaning you see results from a certain method and record it and it is research based etc.) and there is a huge sound place for that BUT....what impacts my son the most are some alternative therapies we do. My son does horse back riding therapy and neurofeedback therapy and this past summer he did a canine therapy program where he was very successful. We now have a working/service dog that we are traning and goes with us everywhere. ALL of our doctors have met him (JJ Yeley, named after a nascar racer...one of my son's obsessions) and each one of them wrote a prescription to have him be a working dog! He makes car rides and every transition better. When my son is agitated he can hold onto the dog and when we walk through places he holds a leash and I hold on to another leash on the other side of his "working harness" and it gives us better boundaries (he tends to go for ME when upset) as well as to keep his mind on a different focus so everything has improved and it is a miracle for us. Some dogs are trained to play hide and seek so that if your child is a runner it can go find him/her. Ours will lie on us and for my son that helps with his sensory seeking giving him a "deep pressure" feeling that beats the heck out of his weighted blanket! I have learned that the daily trials/practices like in traditional therapy are not the most important...there is a magic in some types of therapies like this that often can't be quantified. There are art therapies and music and many other things that really are wonderful and well worth investigating. Do not feel you need to do them all at once! No worries, take your time and investigate what works for your beautiful daughter.
Again welcome to you! I did not re read this so if I made no sense feel free to ask!
HUGS, Dee
