Been lurking awhile, learning and now difficult child has diagnosis!!

Discussion in 'General Parenting' started by KMC, Mar 7, 2007.

  1. KMC

    KMC New Member

    My son 3 1/2 was recently diagnosed with autism and a consideration of ODD. I thought it was just ADHD, but boy was I wrong.
    I thank you all so much though. I didn't log on, but I have been reading every night what you all write for the past 6 months. It helped get me ready for everything. I feel like I'm really on the right path and I wasn't broadsided by the diagnosis. I really feel educated because of you guys, so a big giant THANK YOU!!! :bravo:
    So, he was diagnosis by the school district ( per my request) and now they've referred him to the Kaiser autism clinic nearby. I also registered him with the county to receive services.
    Tomorrow we will start him on Tenex to help calm the anger and tantrums.
    Then, maybe we can reach the teachable little boy inside.
    Any thoughts on Tenex? I've read a few threads here and seem to see many positives.
    Again, thank you all for blazing a trail and smoothing the path for me and the others who will follow behind us. We are giving our kids the chances that our parents never dreamed of.
  2. Shari

    Shari IsItFridayYet?

    Kudos to you and husband. And welcome to the group!
    No experience with Tenex, but I wanted to say hello.
  3. Marguerite

    Marguerite Active Member

    Welcome. Don't feel too upset by an autism diagnosis. There is so much hope and positivity these days. If you've been lurking, you will know about "The Explosive Child". Have you read it yet? You might find it helps with the oppositional behaviour.

    No experience with Tenex - all I could find on it was a reference to using it to treat high blood pressure and migraines. I can't see why it would be relevant. But I'm not a doctor and I don't know your son. The doctor may be prescribing it for other reasons to do with your son's various health issues.

  4. Liahona

    Liahona Active Member

    Just adding my welcome. Sorry I don't know about the medications. I think that autism can have many pluses.
  5. flutterbee

    flutterbee Guest

    Way to go :warrior: !!!

    Welcome to the board.
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome! Glad you found us and came out of lurking mode to say hello. :smile: I think difficult child may have been on tenex for a short period. It didn't help him but I too have read many positives about it.
  7. timer lady

    timer lady Queen of Hearts

    :warrior: Good job!

    Popping in to offer you my welcome. You're off to a good start in finding answers & interventions for your difficult child.

  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    Good Morning and welcome to the board! I cannot offer any experience on the medication, sorry.

    You are so very fortunate to have your difficult child diagnosis'd and beginning therapy early! Early intervetion can make all the difference for our kids. Glad you are here.

  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Welcome to the board. My son has Pervasive Developmental Disorder (PDD)-not otherwise specified. Is your little guy in any community/school interventions to help him? Speech? Occupational Therapist (OT)? PT? Is he in an Early Education school? My son really improved after starting early interventions. All I know of Tenex is that it's a blood pressure medication sometimes used to treat ADHD symptoms or sleep issues. My son isn't on medications. Believe it or not, he improved so much he really doesn't have behavior problems anymore.
  10. Hound dog

    Hound dog Nana's are Beautiful

    Welcome to the board!

    Isn't this a great place? lmao

    I'm so glad you were able to find a proper diagnosis for your lil guy. Information is the key to success. I sure wish the board had existed when my difficult children were young.

    Way to go!! :warrior:
  11. busywend

    busywend Well-Known Member Staff Member

    Welcome! And congrats on being so well informed and successful in your fight to help difficult child! You are on a great path!

    I have had my difficult child on Tenex for Tics. It is for high blood pressure, but given in much different doses for tics. I have not heard of it for ADHD. However, I DID see a BIG improvement in my difficult children mood while on it.
    I only gave it at night - it made her very sleepy - which counteracted the Adderall keeping her up all night! :laugh:

    Here is the thing: since it is a Blood pressure medication it must be administered very consistently. No skipping nights or giving 4 hours later (it helps when it is given at night). My difficult child did have swings in her BiPolar (BP) that started her getting dizzy - come to find out she was not taking her medication every night (live with dad at the time, so I had no control over this). So, I pulled the medication from the mix as I could not be sure it would be a benefit in the long run if it messed with her medical health.

    I have actually wished for tics again for my difficult child just to ger her back on that medication because her mood just improved soooo much while on it. How terrible is that!?!?!?
  12. Sheila

    Sheila Moderator

    I see we've had another Warrior Mom join us! :warrior:

    Welcome aboard! :smile:
  13. Fran

    Fran Former Site Owner

    Hello and welcome. How wonderful that you are on the ball with a son who 3 1/2 yrs old. You may get services in place and have a plan on how to help your son gain self control while working on educating him and socializing him. You are one smart cookie. Good for you.
  14. jodyice

    jodyice New Member

    Hi and welcome to our part of cyber world.
  15. KMC

    KMC New Member

    Thanks everybody!!!
    We're starting him on Tenex today, but he has a cold so I may hold off until tomorrow.
    But thank you again for welcoming me! Things can only go up from here! I will finally get some help and not feel like the worst mom in the world because my son can't do what other kids do. Now I can work to help him be just like the other kids (only so much cuter and smarter, right? )
    You guys have been such a fountain of knowledge for me, though. For once in my ADD life I feel like I know what I'm talking about because of you all.
  16. KMC

    KMC New Member

    Busywend- I've researched Tenex and know about keeping it consistent. Since consistency is not one of my strong points, I'm going to have to work hard.

    Midwest mom- He's not in any therapy schools. He's in a 4 hr/week preschool with his best friend (same age, same size, look like twins) and they work so well together. My son leads his friend into uncharted territory and his friend keeps him out of trouble and provides alibis. SOOOOOO cute!

    Everybody else- Yeah! Thank you! I was a little depressed after they told me the "a" word. I was thinking it was severe ADHD with some Sensory Integration Disorder (SID), a touch of Pervasive Developmental Disorder (PDD), and some ODD thrown in just for fun. The doctor said, "yes, you're right and when you add them together they equal autism". I had to laugh and then go home and cry. You know? And the more I read, the more I'm set free. It answers soooo many questions!! But I'm back and ready to fight!
    The Tenex is to help calm his anger, aggression and help make transitions less of a scream-fest.
    Cross your fingers and hope it helps!!
  17. Marguerite

    Marguerite Active Member

    I don't know how much you've been reading, but I frequently post advice on how to transition with less pain. This came from difficult child 3's psychologist:

    We bought some brightly coloured Post-It notes (do you have these? 3M company makes them). Plus, we have a schedule (we try to keep it strict - we HAD to be strict with it when he was younger). Games stop during school hours and after 8.30 pm. From 6 pm all games must be away from the main TV so that whoever is preparing diner can watch the news (or whatever they want). Between 10 am and 11 am on weekdays difficult child 3 watched the educational stuff on our national TV network.

    Generally we need to transition difficult child 3 OFF games and onto a range of other things. These days we don't need to use the notes, but this is how it worked - we would tell him, "Your bath/dinner/chores are ready. How long will it take you to get to a point in your game when you can save it and shut it down?"
    If he says, "ten minutes," we then say, "OK, you have ten minutes to get to a save point. If you have not by then you must pause it and go and do what we asked you."
    We then write the task on the Post-It note, along with the time he was told. We might also write, "off game by x time" to make it really clear. We then stick the Post-It note in the corner of t he screen but where it won't interfere with his game.
    The biggest problem we used to face was, "But I don't remember you telling me!" This wasn't a lie - he really had tuned us out. He had answered automatically but his mind was on his game. This way the note provided instant proof that we weren't just making it up to be mean - it was true, he had acknowledged and he had been given plenty of notice.

    Egg timers can also work, but it needs to be a system that the child is happy with, too. Sit and discuss it, tell him you're trying to find a way to help him enjoy his play time and to finish what he's doing without feeling rushed, but it's just not good organisation to expect the rest of the family to have to arrange their activities around him, especially when they don't always know when he's going to be finished something. If the bath is ready, it will get cold unless SOMEONE is sent to have their bath. If he's not ready he will miss his turn. If he stalls too long, his dinner will get cold. But if you can work as a team, he can feel satisfied in completing his activity AND not have to eat a cold dinner or have a cold bath, or do outside chores after sunset.

    Once he realises you're trying to work with him and not merely being a barrier, he will begin to work with you also. It takes time and there are often tantrums along the way, but it is a positive step.

    We also chose to not discipline these outbursts because they are not primarily rudeness, they are coming from anxiety and frustration. We don't shout back, we merely say that we don't like being shouted at. However, we choose our moments - if we can see he's about to completely lose it, we back off from over-correction and try to just deal with whatever is the problem. To difficult child 3's credit, he rarely reacts to other people shouting at him as he used to. easy child 2/difficult child 2 was shouting at him yesterday morning about how he left an empty toilet roll in the loo when there is a bin right there to put it in. Finally her boyfriend interrupted her (it took some effort - she was in full Aspie Obsessive Compulsive Disorder (OCD) mode over it) and said, "It wasn't your little brother, it was me. It was 1 am, I was barely awake, I just don't think about that sort of thing when I'm one step away from sleepwalking."
    It was really funny - she can yell at her little brother, but not at her boyfriend. To her credit, she apologised to difficult child 3 for accusing him unjustly (over an empty toilet roll! Good grief!)
    So even though he was only involved on the edge of that one, he still learnt from HER loss of face, that it's risky to accuse someone when you haven't got all the facts.

    Your son's friend is probably your best asset. That is wonderful for him. There are a lot of things you can do to support and help your son, but chances are there are many gifts you haven't yet seen, let alone had the chance to unwrap. Kids like this can't lie effectively (other than try to claim, "I didn't do it!" when they did, so eventually they will learn to not try to lie, if you can challenge them when you read the signs). They are intensely loyal. They are intensely loving to those whom they value (their choice) which flies in the face of previous beliefs that these kids were emotionally cold. They are not. it's just that they don't show their feelings well, but those feelings are definitely there. They are often very bright and gifted, even if it's only in a narrow area. Once you can bring their language skills back into the normal range (and for some this is very difficult; for others, intensive therapy can work wonders) then they can make astounding academic and social progress. Especially academic.
    They often have a different way of learning. Let them do it their way. Encourage them. Value them openly. Love them openly and unconditionally, but don't get physical except on their terms. Don't just grab for a hug, ask them for a hug. Expect great things of them and support them in getting there.

    difficult child 3 is hyperlexic, which for us meant that the written word was the key to teaching him to communicate. It was intensive but enriching for him and very rewarding. The speed at which he could learn was amazing. Using the written word, he learnt all his colours (when he had previously not even understood the concept of colour) in a few hours' intensive play with his babysitter. Seriously - I dropped him off at 10 am and when I collected him at 2 pm he showed me, and read to me, all the colours of the rainbow. He then showed me the different colours on blocks. The doorway in to colours for him was the red colour of a stop light, then the green for go. The word "stop" is written in a lot of places and he had finally made the connection, because I'd previously taught him the word "stop" by drawing traffic lights and a stop sign, in red. HIs babysitter had given him the rest of the rainbow, in four hours.

    It's moments like these with our kids that make motherhood simply magical.

  18. jannie

    jannie trying to survive....

    Welcome to Board !! I'm sorry you need to be here, but you've learned so much. You already seemed so prepared for this. Tenex was the second medication we tried for my little one. He was only four years old. It worked for us and he was on it until just this past January. Good luck with this and all of your interventions. :warrior: