How does everyone cope??

Discussion in 'General Parenting' started by cfa3, Sep 16, 2009.

  1. cfa3

    cfa3 New Member

    I have posted here once or twice before and enjoy this forum a lot. There are some very kind poeple here. I am back to just vent and ask some questions. My son is 10. We are STILL unsure of his diagnoses, even though he has had diagnoses since 2 years old, because he is sooooo complicated. We have never found one of those truly amazing doctors that you hear and read about, we've had the kind that you go in and in 10 minutes they either shrug their shoulders or know your child better than you do, so thats always been dissapointing. Maybe its where we live, maybe its that we dont have the $ to travel around finding the top tier docs. Anyhow, my son is ADHd, mood disorder, Obsessive Compulsive Disorder (OCD), anxiety disoder generalized, has tics, might be Tourette's, and god knows what else. He is basically like a 5 year old in a lot of ways, cant possibly get along with or even undertsand a typical kid his age, he is immature, clingy, an emotional WRECK, violent at times, explosive at times, moody, irrational fears, lots of obssessions, some compulsions, unfocus, hyper, impusilve and very very stimulation-seeking. He is very bright, has a great personality when he is not whining or acting like a baby and he is super social and nice. but he is like a mentally handicapped person, he has psychiatric issues. I have finally decided recently to turn to medications though that has never been my personal preference, but things got to the point that we could barely survive around him much less stay sane. He is just draining. After trying a few disasterous things, we are now on Strattera and Buspar as of the last week, and I am noticing plenty of OCDs, crying, irritable, grumpy, unhappy. I cant tell if this is just one of his mood swings or what. Anyhow, I find the whole medication thing very very frustrating. As for school, we GAVE UP on that totally. He is now at home with me and we are doing a virtual school program. He is so dysfunctional at times and has the capacity for major aggression that we just had to take him out of public school - they were doing nothing but making him and things worse. At last at home I know he is not being restrained and no one is going to misunderstand him or yell at him or in any way cause more problems due to not having a good system to help him.

    My son doesnt have a conduct disorder. Does anyone here have a child with these kinds of just crazy emotional problems?? I am so tired, I try so hard to stay positive and try and have a life of my own, but it is hard some days. What does everyone do about school?? medications? Is your child immature like mine? We take him to a psychologist but she cant get anywhere with him because he is so out of it and in his own play world he wont be serious or talk to her. He also has a speech and language disorder which really puts a wrench in all these efforts to get him to talk and help him. How does everyone cope?? I dread the day when god forbid he explodes so badly that we have to call the police or take him to the hospital. Thanks for listening! :faint:
     
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm tired, so I hope I read this right.

    I think you just haven't taken him to the right type of diagnostician. If I were in your shoes, and with hindsight, I would take him to a neuropsychologist. Rather than your ten minutes you'll get six to ten hours and a MUCH better idea of what is going on with him. Nobody can diagnose something in ten minutes and that's probably why you really don't know what's going on. NeuroPsychs can be found at children's and university hospitals. I think you'll be very pleased if you take him to one. The testing is very intensive and covers all areas. This is a PhD psychologist with extra training in how the brain works. in my opinion they're the best at figuring out what is wrong with a child. My layman's opinion is that it sounds very much like he could be on the high functioning end of the autism spectrum. These kids have many of the problems you described and also are very Obsessive Compulsive Disorder (OCD) and full of irrational fears and they hate change and are delayed emotionally and socially. He isn't crazy, he is wired differently and I wouldn't call the police on such a young child and I'd have him evaluated before putting him in a psychiatric hospital. There is a good chance it's not a psychiatric problem, but if you put him into a hospital, they will most likely say it is, even if it's not, because psychiatric hospitals aren't all that hot at spotting neurological problems. Heck, I have bipolar and have been in adult psychiatric hospitals three times...in my opinion, they aren't all that good at ANYTHING because they are short-term and eager to usher you home. But you do need to take him in for a pre-planned neuropsychologist evaluation at least before things do escalate. JMO of course. We are all just parents. Good luck and welcome to the board.
     
    Last edited: Sep 16, 2009
  3. tiredmommy

    tiredmommy Site Moderator

    Hi cfa3. :) I agree with MWM that you want to keep trying. Neuropsychs are a good option and so are developmental pediatricians. I'm just a mom, but your son seems to have several red flags for autism spectrum disorders. You may want to see if there's an autism clinic nearby.
     
  4. tictoc

    tictoc New Member

    Hi,
    I, too, think you should see a neuropsychologist for a full evaluation. I have a 6 y.o. son with Tourette Syndrome and much of what you described fits under that diagnosis. Visit the Tourette Syndrome Association website at www.tsa-usa.org. In particular, look for a publication called "Tourette's is More than Just Tics," which covers many of the associated symptoms one can have with tics.

    Has your son's Obsessive Compulsive Disorder (OCD) increased since he started Strattera? My son's tics got much worse when he tried Strattera. Also, if Obsessive Compulsive Disorder (OCD) is one of his main issues, Buspar might not be the best choice for anxiety. Our neuropsychologist says that it helps with Generalized Anxiety Disorder (GAD), but not with Obsessive Compulsive Disorder (OCD).

    Good luck.
     
  5. cfa3

    cfa3 New Member

    Thank you all very much. My son is diagnosed with Tourette's, I just never felt strongly about that or any diagnoses. His tics dissapeared for so long (one year) I figured he cant have Tourette's Syndrome, but I think maybe a lot of his tics are Obsessive Compulsive Disorder (OCD) related, and I think Tourette's Syndrome and Obsessive Compulsive Disorder (OCD) can be intertwined. My son will fixate on things in his mind like a tic. We have been on strattera for 6 days and I have NO idea how long its supposed to take until it kicks in but my son is VERY medications sensitive so nothing would surprise me. With the strattera I am noticing plenty Obsessive Compulsive Disorder (OCD) but he has also had bouts of that when on no medications, but I am also seeing that he is awfully grumpy, irritable, shouting at me etc (which is of course mild considering the other end of the spectrum of his behaviors), and I do notice that impulsitivity is down a little but that could be the buspar calming him down. In short, if this Strattera is helping, its either taking a while to kick in or its making him grumpy first. I dont know. Today he had a violent explosion, the second in 2 weeks where I probably should have called the police for my safety but didnt. In this explosion, which is more like a blind rage/attack than a thought out tantrum, he did less damage and stopped sooner than last week's attack, but still, I cant go on like this home with him all day risking serious bodily harm (today I got off easy with several severe bites on my arms). I would think that the strattera is not good if he had that kind of explosion, but I dont know, im so tired at this point it makes it difficult to think. Anyhow, I definitely dont see the buspar addressing the Obsessive Compulsive Disorder (OCD). I need to find a good neuropsychologist department at a University or hospital here in FL. Maybe I will post asking if anyone in FL has an recommendations. As for autism, that is what he was originally diagnosed with at 2 years old actually, but over the years many people we have gone to have felt that he does have quirks and some symptoms, but lacks the core issues that make autism unique. I also think his speech and language disorder really gives him a lot of trouble. He is super social, he reaches out to others and has intimate and emotional bonds with him, he not far away in his world etc. Anyhow, as for the extreme immaturity, I dont know. Maybe growing up in Special Education and not having many social and peer successes has delayed his maturity. maybe not. Do any of you ever have problems where your child attacks? My son is like an animal who is being threatened when these attacks happen. Thank you for you advice and support!!!
     
  6. cfa3

    cfa3 New Member

    MWM - Youre right, I am not able right now to tell if its a neurological problem or a psychiatric one, but is there a difference? He had had MANY evaluations, one at a University, and a few with private practitioners. We have come out of it with everything from asperger's to Obsessive Compulsive Disorder (OCD) to ADHD, Tourette's and now possible bi polar. Thats why we dont know whats wrong. No one has been able to say, ok, this is whats going on here. I think at this point since some time has passed since an evaluation I should find a neuropsychologist and do another. The last thing on earth I want is my precious little guy in handcuffs and drugged out, but he is hurting me on a weekly basis lately. Today my husband had to run over here from work because my son was freaking out and biting, kicking, and throwing any and everything he could get his hands on. I feel like the doctors have failed us. I think I just need to find someone else at this point to see him. Thanks for your words and advice!
     
  7. mstang67chic

    mstang67chic Going Green

    I would definately get another evaluation. None of you can keep living like this. Also, everytime he has a rage, document it as much as possible. Video tape it, journal it...whatever. Be sure to take pictures of damage and injuries too. I don't mean for you to use the documentation as police evidence but as diagnostic evidence.

    Another thought....you might want to look into a class....I believe it's called TAPS...theraputic assault prevention system....something like that. husband and I had to take it to get our foster license. It's basically a cross between self defense and restraining. You learn how to get yourself out of the grasp of the other person and restrain them in a way that is safe for you both. I've used it many times in the past with my difficult child. We took it through a private foster agency so if there are any in your area, you may want to see if they have something like that.

    I hope you can find some good help soon. None of you deserve this.
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Yup, there's a big difference between how you TREAT psychiatric problems vs. neuro. problems, although often they are intertwined. After you said Tourettes, I thought it could definitely be that as Obsessive Compulsive Disorder (OCD) is HUGE in Tourettes as is bipolar...so there you have a possible mood disorder BECAUSE of a neurological disorder. It's not always like that though. Autism Spectrum Disorders (ASD) is neurological and only 50% of those kids are on medication. The majority are mostly treated with specific interventions that are very helpful to their specific issues. Any raging in Autism Spectrum Disorders (ASD) is caused by extreme frustration and the fact t hat Autism Spectrum Disorders (ASD) kids have lower thresholds of frustration as well. My son has Autism Spectrum Disorders (ASD)...he has a neurological problem.
    I have a serious mood disorder...it is psychiatric, treated mostly with medication and therapy when I feel I need it. If I had my son's treatment it wouldn't help me. If he had mine, it wouldn't help HIM. It's really important to try to sort out what is going on. I think just treating symptoms means that you are missing the big pictures and the poor kid could end up on five medications, one for each symptom...and be cognitively dulled, doped up, and still struggling. in my opinion it's best to know the biggest disorder and treat it, working down from there. Usually if you treat the largest disorder the other ones get better as the big one does. They can even disappear.

    I think a neuropsychologist is a very good idea. As for Tourette's, I'd want a neurologist for that (and, yes, a neurologist is way different than a neuropsychologist). So I'd visit a neurologist as well, but I would definitely still have a neuropsychologist evaluation.

    Good luck! :D
     
  9. crushing

    crushing son bipolar disorder

    I have no idea why I am answering, because my 9 year old son is also at home. The school told me they could not handle him. He was diagnosed last year with Bipolar not otherwise specified, when he was 5 he was diagnosed with Obsessive Compulsive Disorder (OCD). Because, he washed his hands until they bleed. As far as explosive outburst. My son has them on a regular basis. He was hospitalized last year for one month. It was the hardest think I think I have ever done. But, he came out smiling laughing and we went for one year without rages. (he was put in the hospital for hitting me with a baseball bat and trying to kill his brother) He went back into the hospital again about a month ago. He has been home with me since then. Yes he still rages and I have to restrain him. So he does not hurt me or himself. Everyone keeps telling me his medications are not right. But, like you I am very confused. I am writing not to offer advice but to let you know I am where you are too. And I hope we both find a answer soon.
     
  10. cfa3

    cfa3 New Member

    crushing,

    You know its funny but sometimes hearing about someone else in the same situation as you is as helpful as someone writing with advice and ideas of what to do. thank you so so much for sharing. I dread having to put my son in a hospital, especially since we dont know if its a psychiatric disorder or neurological. Its just scary putting your child in the hands of the public health system. Maybe if i were a millionaire it would be a different story. I hope you will continue to post here and let us and me know how things are going. Reading your post really made me feel less alone and despaired. Thank you.
     
  11. busywend

    busywend Well-Known Member Staff Member

    My difficult child told me Straterra made her hate me. Her words.
    So, yes I do believe it can cause more emotional swings.

    I agree that your son needs an evaluation with a neuropsychologist. Keep looking for that doctor that makes the difference. When you find him/her - you will not regret it.
     
  12. KTMom91

    KTMom91 Well-Known Member

    My daughter did fairly well on Strattera, but my hubby was a total mess. The mood swings were severe; Hubby had previously been diagnosis'd as unipolar depressive.

    I would also look for a more thorough evaluation.
     
  13. Christy

    Christy New Member

    Hugs to you cfa3, you've got a lot on your plate.

    I have also homeschooled due to my difficult child's extreme behaviors and violent rages. He's been hospitalized several times, we've had to involve the police on multiple occasions both at home and at school, and if you saw my little angel asleep in his bed right now, you would never believe it. How do I cope? Some days are better than others and I try to remember the good ones. I try not to expect too much and not to compare difficult child to other kids. I try to see the positive in a situation whenever possible and I try not to get too discouraged when he takes a step backward. I insist on an early bedtime so that husband and I can have some time to relax. In addition to this site, I have a friend to whom I can vent as needed and I attend a monthly NAMI support group meeting. A sense of humor helps a lot. When I was homeschooling difficult child, it was very difficult. I loved the teaching part and I thought difficult child was getting a far better education than he did in school but being both mom and teacher took a big toll on our relationship due to the continuous power struggles. I decided to place him back in school and it is not perfect but it is better than it was in the past and I have a break from his gfgness which helps me to be more positive and patient when he's home. As for a diagnosis, I'd advice you to seek additional evaluations because it will guide treatment and the right interventions can make a significant difference. The correct medication can be a lifesaver but the wrong one can be disastrous. Unfortunately there is a lot of trial and error involved in finding the right one(s). While everyone is different, I wanted to mention that straterra was NOT a good medication for my son and it caused an increase in aggression. Because it did help with focus and hyperactivity, it took us too long to figure out that it was having a negative effect, so I'd urge you to monitor behaviors closely while using it.

    Hang in there and try to stay positive. I wish you the best in finding help for your son.
    Christy
     
  14. pepperidge

    pepperidge New Member

    Hi I have two sons that have had some of same probelms.

    Strattera was really bad for my son's tics--also stimulants.

    I am obviously no doctor, but have you tried something like Risperdal or
    Abilify? That might help with aggression. It also seemed to help a bit with keeping my son's anxiety at bay.

    We also had great luck with my oldest with Lamictal. He seems to either be medicated out of or growing out of the really immature silliness--like stuffing bread in the VCR kind of silliness.

    WE went through lots of medications before we hit on a few things. Peronally I would try to deal liwth the aggression, violence andthose kind of issues first. Then worry about school and focus issues.

    A really experience psychiatrist/neuropsychologist combo would be very helpful. I know, just about darn near impossible to find.
     
  15. Marguerite

    Marguerite Active Member

    Hi, CFA, welcome.

    You asked if any of us have kids with similar sets of symptoms.

    Well, mine do. Both my boys have been through similar manifestations. I'm not saying your son definitely has autism - it could be something else. But I would put it on the shortlist of possibilities.

    The thing is, when we as parentshave a kid like this, we so desperately want some magical geniius to come down out of the sky and make a pronouncement which explains everything, then hand us a bottle of pills with the words, "Take one a day, it will fix everything."

    Unfortunately, it doens't work this way. We struggled for years searching for someone with the answers, before I looked in the mirror to find the one person with the best understanding.

    That doesn't mean I ignore all professional help, or shun experts. Not at all. But instead of me relying on their god-like wisdom, I look on them as tools in my armoury, as facilitators.

    What we needed and what has worked for us - the multidisciplinary approach. Idally, you need a good GP to be the spider at the centre of the web, to coordinate it all and be the connection between all the experts. But with something like autism (or whatever else your son has), what ALSO works, with equal validity, is YOU at the centre of the web. YOU coordinate the experts, to collate the reports as they come in and get copies of those reports to where they have to go.

    So what should be your startioong point?

    First, keep a good diary of your child. Go back and write what you can remember. Any details you later recall - add them. Write a book. Keep updating. Write the interesting stuff, the scary stuff, the whole lot. We began a Communication Book which travelled in difficult child 3's school bag. It was parent's responsibility to handle the book at home and to write in it for the teacher. At school it was the teacher's responsibility to read parent's notes and to in turn write down information on anything of value. You need to NOT make this the child's responsibility in any way - this book is too important and frankly, the child has no investment in this process. And shouldn't have.

    Also with a Communication Book, you have to be VERY forgiving of what people write. If the teacher writes, "I could have cheerfully throttled your son today, and laughed through the entire process," you have to be forgiving. After all, surely you understand that feeling? Your aim, jointly with the teacher, is to find out WHY this happened, so you can work as a team to find out how to prevent this.
    The value - sometimes one or other of you will spot a possible connection. Perhaps his behaviour is worse when he had a rough night the night before? Lack of sleep can be a problem. We found a connection - if difficult child 3 was coming down with a virus, his behaviour would be horrible for the three days BEFORE symptoms showed up. Then as he recovered, behaviour would be bad again. But while he was feverish - he was fine, behaviour-wise.

    Next step - once you have made a list of his most obvious problems, search out medical experts who deal with this area. For example, we were worried about difficult child 3's language delay so we organised for him to be assessed by Speeth Pathologists. This was independent of any other expert. And the Speech pathologist said, "How is his hearing? That can cause language delay."
    So the next expert - we had difficult child 3's hearing checked out (normal). OK, the test was normal, but having had it done, having a report that said, "His hearing is fine," was actually very important. It saved a lot of time.

    Next - we had a clinical psychologist assess him. Her report showed which areas he was functioning well in, and which areas he was badly behind in.

    I was keepnig copies of al lthese reports. Individually they gave no answers. But when they were all put together and placed in front of a pediatrician who specialised in this sort of problem - he was able to join the dots and answer the questions.

    We could have gone to the pediatrician to begin with. He would NOT have been able to tell us anything, not without the other tests being done. What was needed, was for each expert form a wide range of disciplines, to present us with a piece of the jigsaw puzzle. For alot of these problems, the jigsaw has many pieces each of them often looking very different. Individually we can't work out whaty the puzzle is a picture of, only when we begin to assemble it and connecting the pieces together.

    But the person who has to oversee the assembly of the puzzle - is you. NOT a specialist, not a therapist. You. Because when it comes to your child, YOU are the expert also.

    Now, to therapy. Again, you could take your child Occupational Therapist (OT) a specialist cwntre where children with the same disability are getting expert help. If one is available in your area - fabulous! But even that is never going to be enough. For maximum benefit, you have to use immersion techniques. You have to surround this child with constant therapy. YOU become a therapist.

    An example - when we travelled in New Zealand we were impressed at the availability of immersion schools for children of Maori decent. These immersion schools surrond the children with Maori language, Maori culture and Maori life. A lot of these children don't begin to learn English until high school - and this, in an English-speaking country! But it works.

    In the same way, a child with autism (for example) needs ongoing therapy and consistency. You could place your child in the best school available, with marvellous aide support and the best Special Education teacher i nthe world. But if your child comes home form school to a more typical family life where you have the same expectations of your child as for 'normal' siblings, where you use the same discipline techniques etc, and you don't modify anything you do - then you will be undermining what the school does. And what is far more likely - the palcement at school is generally only an approximation at best. The child has a harder time than most kids, just trying to cope each day. Whatever you can do to help the child learn how to adapt, is of great value. The more you can do, the better. If part of what you do is provide your child with valuable (and often expensive) therapy - great! But if you can't afford it, there is still a great deal you can do yourself, to help your child.

    In our case we live too far away from services. Even the local education authorities have made some bad mistakes with him (and with other autistic kids). I've actually had to become an advocate to bring about change not only for my son, but for other kids in our area.

    I'm not saying you have to go that far. But you need to be the sort of person who has the courage and confidence to. If you don't feel you are that person, then you need to work to become that person. Or failing that, find someone who is that person and attach yourself to their coat-tails.

    Anyone can do it. You do what you can. What you can't do, you find someone else who can, and link in with them.

    But you do need to stop looking for the single professional who can do this. You won't find one. Instead, you need to create one. Find someone who comes close, then work on them to educate them about YOUR son, then when they have enough information, ask them what you need to - "Tell me what you think is wrong with my child. Then tell me what we can do to help him. Work with me in this."

    When we were getting difficult child 3 diagnosed, we had a series of people getting closer and closer. The Speech pathologist eventually said, "This is looking more and more like autism, it just needs a few more other experts to give their opinion in their field. But don't worry - the Autism Association will have people to help you and services for him. You'll be right form here on in."
    The Hearing Clinic said the same thing - "His hearing checks out fine, yet he has language delay. Depending on what the psychologist says, this looks like autism. But don't worry, the Autism Association will look after you from here."
    The pediatrician we saw said, "Given the other reports, this looks like autism. Get in touch with Autism Association, they have all the services he will need. You'll be well-looked after."

    The problem with this - Autism Association is too far away from us, too thinly stretched and a non-profit organisation with little public funding. Why should they be expected to pick up the slack for such a huge problem? They simply couldn't do it.

    We learned that a lot of things we had been doing, working it out for ourselves, were exacrtly what he needed. Some of our ideas were a case of us reinventing the wheel; some of our ideas were very new and have since been used to help other kids.

    I'm not a psychologist. I'm not a Speech Therapist. I'm not a hearing expert. I'm 'just' a parent. But I KNOW we have worked wonders with this kid, and with his siblings.

    This website also helped a great deal - we had reached a brick wall in some areas and people on tis site showed me how to take a few steps back, look around and see the doorway off to one side. I had been slamming my head against the brick wall when all I had to do was take a few steps to the side to find the open door. Far more effective, far less painful.

    So welcome to the site. I hope we can help you.

    A thought - to consider the autism possibility, look at the Pervasive Developmental Disorder (PDD) questionnaire on www.childbrain.com and do the test on your son. Take the printout to whoever you takr your son to see. Keep a copy on file - the results will change as he gets older and more capable.

    Whatever the eventual diagnosis, there are things you can do with each facet of his presentation. Treat it symptomatically if you have little other choice. Whatever can bring a little improvement can begin to help him cope in other areas.

    Marg
     
  16. Nomad

    Nomad Guest

    CFA 3

    Welcome...

    Coping was NOT very easy for husband and I. Sometimes I would think it was because we literally have no relatives and had NO one to help us. Few friends wanted or could help either...a lonely and difficult existence.

    We learned over the years to find babysitters and pay extra for a brief night out. Sometimes husband and I would go out for 1.5 hours to kmart shopping on a Friday night or to an inexpensive restaurant...literally ANYTHING. We would pay the sitter EXTRA 'cause we were no fools...staying with- our difficult child was extra work. We always got really goooood people....really responsible hard working young people or adults and we didn't stay out long.

    I too homeschooled my child...back then they didn't have many virtual/on line type programs available.

    In retrospect...I'm kinda glad I did...but I would NOT recommend you do it for the long haul. It is not good for YOU.

    At some point, if you could do a half and half program...I did this too and it was GREAT.

    I sent difficult child to regular school for two classes and homeschooled her for the rest. This was by and large the BEST YEARS OF SCHOOLING FOR difficult child. It was important for her to have some social interaction and she was able to reign herself in for the two periods rather nicely.

    Is your child seeing a therapist? Also, if your psychiatrist (MD) doesn't have a diagnosis or at least is not formulating one, it might be a good idea to seek a second opinion. You might ask your pediatrician or other mothers or school administrators for recommendations. If you hear a name more than once...go for it!

    More on coping....
    Make sure you take extremely good care of yourself and your relationship with- your husband. Do NOT make your life center completely around your child. Sure, your child is basically a special needs child and requires some extra time and care.

    However, it is important to TAKE TIME to nurture yourself and your relationship with- your spouse or your health and your relationships will suffer.

    Are there any other children? Those relationships will have to have attention as well. Perhaps your husband can watch your difficult child, while one of you takes the other to a movie or McDonalds once in awhile or you can have a relative take one out for ice cream...be creative...do a little something to give them attention.

    Are there any psychological diagnosis's in your family or that of the children's father? You might want to read up on these things...see if there are any similar symptoms. Whatever symptoms you observe...you might want to read up on what you find and see if you can start bringing some things to the attention of the doctor.

    At some point soon, consider taking your child to a therapist...a psychologist or mental health counselor for talk therapy.
    This might not be a bad thing for you to consider as well...certainly would help you cope with- the enormous burden of having a special needs child.

    Sending you good thoughts.
     
  17. Mandy

    Mandy Parent In Training

    My son has sent us down a similar path with his rages but thankfully they are controlled right now... this could always change tomorrow unfortunatly.

    I am sending Little Bear to school because I also believe it is good for all of us to have a break from each other. Home schooling did sound like an easier option for us but I know that if I go through this gruelling process at school it will be better for Little Bear in the long run.

    I too am in the diagnois run around right now and would definitly take MWM advice to get him into some kind of specialist. We are going the multi. decipline route right now through Little Bear's school just because of cost, but I am also looking at our local university for options.

    HUGS
     
  18. cfa3

    cfa3 New Member

    Christy:

    Very excellent advice! I have been doing a lot of just focusing on the "now", the good things about today, the positive things about my son. He has a very strict early bed time exactly so that we dont go crazy and we have a few hours to ourselves. Sometimes it amazes that I feel that the world doesnt know about us, doesnt know about the battle we have in our homes, the work we do, the fight we fight. Thank you so much for replying to me.

    Pepperidge: Yes we have tried Abilify and for a few months it workedgreat, even lessened the tics, but all of a sudden one day my son became almost suicidal, and we were all very scared and removed him from the medication. and slowly he recovered. I have been scared to try anything like that since, but now we are considering perhaps Risperdal. We took him off the Stratterra a few days ago. We have another medications appointment next week and currently have an Rx for Concerta though I am scared to try a stimulant again, but I figure we wont know if we dont try. Thank you for taking the time to reply to me!

    Margeurite: Wow, I think you could publish that and sell it! Your advice reads like an excellent how to manual that everyone should read! What you say is so true! I actually believe it or not 100% agree that I am incharge of all this and that I am the expert here, and interestingly enough I have never reallyu relied on the doctors, their opinions or there medicines. Only now am I focusing more on that because things have gotten to the out of control stage with my son (the violence) and so I need, if there exists, the right medications, and some training on handling this, but otherwise I have never really felt like there is one doctor "savior" out there, etc. No one knows my son better than me, and so no one even with their expert knowledge, is going to know better than I. Of course I dont knwo abotu medications, I dont know about various behavior techniques or skills training techniques etc, and so I need doctors, but I do not feel like I will find one that will put the rainbow in the sky for us. You are so right. As for the ongoing therapy, yes, we do have that kind of life. My husband and I knwo what to do and not to do (for the most part of course), what discipline techniques are right for him, what to expect and not to expect from him, what areas to push him in, what areas to teach him in, etc etc etc. Absolutely. Treating him like a normal child would be very harmful for him. We are far from perfect and we get frustrated with him, exasperated, sometimes shout, etc, but overall we do know who he is. We do speech stuff at home, learn skills at home, have goals, have rules, have little ways of incorporating constant teaching throughout the day. The homeschool thing may not last through the years as he enjoys being out around others etc, but for now it is good so he can learn some basic school skills he missed at the god awful public schools here. Anyhow, not to ramble, but thank you so much! I appreciate you taking all the time to impart your info to me! And I feel the same way with running into a brick wall and not seeing any other direction, and thats where this forum has been incredible, showing and reminding me that there is also left and right, not just that wall in front of me. sometimes all it takes to keep going on is a little reminder that youre not at a dead end though it FEELS that way at times. This is the reminder you all have given me in replying. Thank you so much. The info is invaluable.

    Nomad: I agree with what you have said, my husband and I do things like just go the grocery together alone or out to dinner once a month, jsut to feel human and sane again. thank you for the coping tips. I print out all of your responses so I can refresh myself when I need it. Thank you for replying to me!

    :)
     
  19. ML

    ML Guest

    Manster, still ten till next Wed has many of these symptoms. He has tics, emotional lability, obsessions (mostly with food), ANXIETY, executive functioning challenges, etc. Pervasive Developmental Disorder (PDD)/AS/Spectrum.... with the right interventions these are not the end of the world. I'm glad you found this community, these amazing people are my guardian angels. All the best, ML
     
  20. TerryJ2

    TerryJ2 Well-Known Member

    Hi cfa3 and crushing, I feel for you.
    It is so draining.
    You've gotten some great advice here.
    One thing I have to remember to do is not feel guilty for getting a massage, sitting in the car and reading a book, or having a glass of tea or wine all by myself, just to center myself.
    I agree, that I would continue on the hunt for a more thorough evaluation, and keep tweaking the medications.
     
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