I am so frustrated and sad and angry and....

Discussion in 'General Parenting' started by Dara, Jan 18, 2008.

  1. Dara

    Dara New Member

    I dont know which way is up anymore! As my husband said it best, its like you feel your sanity slipping away. We go to doctors and therapies and have been doing so since he was a year old and he is a perfect child there and does all he is asked to do but for us, he is a completely different child! I am not saying that his language is fantastic at speech or therapy but he speaks to them. 85% of our day is trying to communicate with him and he will just use his nonsense words. His therapist and head dr have seen the videos. We are all in agreement that it is 100% deliberate it is just how do we get him to stop it...no answers! How is he going to speak better if he doesnt speak! So he excels in speech and therapy so what! We dont see any of it at home. He does nothing at home. In fact my nose is bruised from him punching me for the upteenth time! His behavior is horrid at home. We talked to the therapists about it...no answers. In fact, nobody has any answers on how to deal with any of it. The good news is, that we are seeing a new neurologist on the 31st. This is neurologist number 4. This guy specializes in behavioral neurology and Developmental delays and autism so maybe he will be our match. The Mayo clinic is running so behind that the earliest we will get in is in July or August...
     
  2. smallworld

    smallworld Moderator

    Dara, my kids go to a behavioral neurologist (for migraines and also as a second set of eyes on their mood disorder medications). He's just tops. I hope your new neurologist is able to pin down what's going on with Sammy and make suggestions for tangible results. You guys deserve a break!
     
  3. Dara

    Dara New Member

    I hope this guys is a match for us. Yes we want answers but I know that is not probable. I just want a working plan in place so we can have a somewhat functioning life!
     
  4. daralex

    daralex Clinging onto my sanity

    hi Dara,
    I'm a Dara too! I really hope this next guy is a better match for you and sorry to hear of all the frustration and pain. How does he function away from home? Is it just at home that he is deliberately doing this? I really have no experience in this area, but just wanted you to know I feel your pain (((hugs)))
    -Dara
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Dara, when he talks in therapy can he speak in full, coherent sentences or does he answer in phrases or "yes" or "no." Does he just appear to understand them better than you at home? It's bizarre that he would have really good speech/receptive language at therapists and not at home. If he is fluent elsewhere, I really have no advice except to keep evaluating him until somebody figures him out. Eventually, somebody will. This doctor you are seeing sounds really good.
     
  6. Dara

    Dara New Member

    They do have concerns with his comprehension. He does speak in 2 or 3 word sentences at home too when he feels it necessary! At this point the therapists dont know how to transfer any of this to the home. I just hope that this new guy will do testing and be more proactive in helping us than the last.
    Dara, I have never met another Dara so good to meet you!
     
  7. Mrs Smith

    Mrs Smith New Member

    I don't blame you for feeling frustrated, sad and angry- sure sounds like intentional behavior. He's a smart little bugger!

    This behavior reminds me of my son's answer to his therapist's question, "why do you behave in school but not at home"...because I wouldn't know what to do at school if they didn't tell me, but at home I know what I want to do.

    He's learned to conform in public but it's draining and he needs lots of uninterrupted down time when he gets home. Any attempt by us to try to get him to do anything was met with extreme opposition and meltdowns at that age. I really thought I was going insane at the time. It has gotten better over the years though, and he's more willing to compromise now but has always had strong beliefs about what was right for him. I've learned to follow his lead more than my own.

    Keep us posted on your progress. Sounds like you might have found the right person. Fingers crossed. Good luck!
     
Loading...