Almost a year...

Discussion in 'General Parenting' started by frustrated04, Apr 20, 2013.

  1. frustrated04

    frustrated04 Guest

    It's just shy of a year since I came here and vented about my ds's problems.

    He's 8, strong, and nothing's changed.

    I do finally have some labels (not yet official diagnoses) that can explain him. It only took 8 years to figure it out.

    Expressive language disorder, developmental coordination disorder, and generalized anxiety disorder. His paperwork is "being processed" to go to the psychiatrist. But it's taking too long!

    I read The Explosive Child and cried over the similarities. Then I cried because I can't see plan B actually working due to the language problems. He doesn't have a split second to think using emergency plan b before reacting.

    We have 3 useless therapists. I even got our insurance to cover the behaviorist of behaviorists; board certified behavior analyst. Boy was that a mistake! My ds is so "normal" and ahead of her usual clients, that she refuses to see his disabilities. She still has no plan in the works. Once again, it's either on me to get her working with ds, or I'm firing her.

    Anyway, I'm sure I'll be around a lot picking your brains. I'm sick and tired of hearing from others who claim they'd "never tolerate" some of the things my ds does. Well that's a great theory, but it doesn't fly in practice. I don't "tolerate" even half the behaviors from my disabled older daughter, and it works just fine. Ds is another universe.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Autism Spectrum Disorders (ASD) maybe? Ever see a neuropsychologist?
  3. frustrated04

    frustrated04 Guest

    I'm no longer concerned with any diagnoses. Anxiety, language, and some others works fine for me.

    Working with him and teaching him to tolerate minor frustrations is the goal of the moment.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, if you live in the US, you can get far more help in school and the community with a label, but if that's how you want to handle it, that is your right. Does he get help in school at all, like a 504 or IEP? Is he in treatment with a professional to help you both out? It is not easy to figure out and/or parent a differently wired child. Is there a father involved to give you a rest?
  5. frustrated04

    frustrated04 Guest

    He has an Autism Spectrum Disorders (ASD) label for the services. He's had varying diagnoses since he was little. No diagnosis, even autism at age 3, ever came with services. I've had to fight for what we do have and it's not helping.

    No IEP because we homeschool. He gets speech and occupational therapy as well as 3 hours weekly with a behaviorist.

    Most of his therapists are now just getting in the way.
  6. frustrated04

    frustrated04 Guest

    Has anyone been able to use the methods from The Explosive Child with a child who has an expressive language disability?

    I don't have therapy options so I can't switch speech provider, or occupational therapist, or anything else for that matter.

    Anyone have luck getting emergency medications from a regular Dr? We're months away from the psychiatrist, but he needs something now.

    He doesn't take any behavior/mood medications yet.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ok, I'm praying for buddy here. Paging buddy :)

    Hon, the problem without services is that you can't use the stuff that help many of our kids. Can you at least get him to see a speech and language specialist or read up on that and use their methods? You can also learn perhaps what to do for Occupational Therapist (OT). I can't be much help because we always used whatever was available and were happy for the assistance.

    Buddy is the one who knows the most about this and I believe she IS a Speech Language Pathologist (SLP), right, buddy?

    I will send her a message to kind of poke her and see if she can help. I'm sure she'd like to do that if she could.

    I don't know how the Explosive Child could help a child with speech/language and coordination difficulties. The Easy Child is a form of unorthodox discipline that some of us use on our kids. It does not fix any specific problems.

    Ok, paging Ms. Buddy....
  8. frustrated04

    frustrated04 Guest

    Little dude has been in speech therapy consistently for the last 6 years. I think it may be time to back off and work on our own. I no longer see any concrete progress.

    Same with occupational therapy.

    I have no problems working out the Occupational Therapist (OT) type stuff. But the expressive language stuff is really difficult.

    I do currently have all available services in place. I just feel like they're getting in the way of, not contributing to, his overall progress.
  9. frustrated04

    frustrated04 Guest

    I don't expect The Explosive Child to help his developmental/neuro issues, I'm wondering how to work the behavioral side of things when a kid has these issues.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just one last comment and of course JMO.

    You probably can't help him on your own. He probably has autism. And my son had a diagnosis. of Pervasive Developmental Disorder (PDD)-not otherwise specified and your son is way behind where mine was at his age, so it doesn't seem to be a high functioning form. I really don't understand why you want to or think that you can help him without professionals when he is already eight and still isn't talking. I know how frustrating Autism Spectrum Disorders (ASD) can be (because it's shorter, I'm going to call it Autism Spectrum Disorders (ASD)), but I truthfully don't think taking him out of school and cutting his services is going to help him with the issues he faces. Speech, for example, can stagnant then increase...worth a try, right? As for the behaviors, much of that is his frustration with not being able to communicate and, in general, being different. He knows he is different. Does he socialize at all? Is he in anything like Special Olympics or a homeschooling social group? Boy Scouts? Swimming? Art? Anything were he can express himself without talking? Have you or anyone else ever tried sign language? My son did that when he was a toddler and it was very helpful and stopped a lot of meltdowns too. It was his way of "talking" until he could actually talk. Ever join a group of parents who have kids with Autism Spectrum Disorders (ASD) traits?

    At any rate, after this post I am bowing out of this thread as I have no ideas on how you can help him completely on your own. I do wish you all the luck in the world though :)!
  11. frustrated04

    frustrated04 Guest

    Thank you for your thoughts! Opinions are why we post, right? :)

    When little dude is having a good day, his language is *nearly* typical. But once he's frustrated, he has a really hard time. This is why he's diagnosed with an expressive language disorder.

    I pulled him from public school (well over a year ago) when he was receiving NONE of the services I fought to get in his IEP.

    Since he's been home, he's made a ton of progress.

    Of course he socializes! It's impossible not to. He has a wide age range of friends. He plays drums. He participates in book club and Lego club.

    I do work with him on signing, but the 3 service providers we have disagree with it and will not use signing with him. I don't care how he communicates when he's frustrated.

    I know working with him on my own sounds crazy, but there are a lot of people like us who live in areas where the services are either substandard or non existent.
  12. InsaneCdn

    InsaneCdn Well-Known Member

    I hear you. Walked in your shoes - except for the home-schooling.
    Had a whole list of dxes that kept growing.
    The problem is... dxes like Developmental Coordination Disorder (DCD) cannot be given if there is another reason for the motor skills issues - and that includes Autism Spectrum Disorders (ASD)/Aspie. But when you get a long list of dxes like this... it can "mask" the umbrella diagnosis.
    And, unfortunately, it's the umbrella dxes that often get you the interventions, accommodations, therapies, and/or medications.

    (in our part of the world, it paid to get the others first... because we don't get technology support for an Aspie who can't write... but CAN get it for a kid with Developmental Coordination Disorder (DCD)... go figure!)
  13. Liahona

    Liahona Guest

    How is his receptive language?

    some of mine have expressive lang problems. We label everything, use sign language, get his siblings to model words, use meal times as therapy sessions. If he wants something take his hand and help him sign it. You might already do all of this. I have also heard of kids using PECs or pictures to talk or computer programs. Is he able to talk about what upset him after he calms down?

    I have found that when frustrated or hurt or sick language goes out the window. Then I have to get right down at his level, take lots of time for him to respond to me, and there are times I'm still guessing.

    I also homeschool.
  14. frustrated04

    frustrated04 Guest

    We have the Autism Spectrum Disorders (ASD) label to receive services. I've got a BCBA here 3 hours each week, Occupational Therapist (OT) every week and speech every week.

    Im here because the thapies are NOT helping. I have the services, they're just making life more stressful.

    His receptive is above average. We have a few moments that make me wonder about receptive, but overall I think he's pretty good.

    Once he calms down there's no talking about what made him frustrated/mad because he'll just get mad while talking about it.

    I have to use meal time for feeding sessions. It stinks.

    I do have some pictures boards and things like that, but he's very high functioning and I get no support from the therapists in using alternate communication. Not even his speech therapist will help.

    I need to figure out how to address the anxiety and behavior that I think is getting in the way of everything else.

    Sorry this post is jumbled, I'm just not even sure what I'm looking for anymore. Lol.
  15. frustrated04

    frustrated04 Guest

    He absolutely can express himself. He can nearly have a conversation as well. Conversation skills are best in bed right after bath and just before the melatonin knocks him out.

    He has a lot of problems with pragmatics, object function, using phrases appropriately, etc.

    All of this goes out the window when he's sick or frustrated.

    I know that he does talk to one of the boys he plays with. Actually walks and talks! It's really cool to watch.

    But most of his friends have a reason for limited language and I think that's why he gets along with them so well- one is severely autistic and while not non verbal, he doesn't have much functional. Another friend is 3, so they usually don't talk. And 2 other friends have only been speaking English for a few months, so obviously they're not having intense conversations.
  16. frustrated04

    frustrated04 Guest

    His list was actually shortened recently. He used to be labeled all over the place.

    These 3 actually fit him quite well.

    Other than the anxiety being medically treated (he'll be seeing psychiatrist soon), none of the labels really come with "expected" behaviors and ideas for treating.

    I think the mix of anxiety and expressive language disorder feed off each other.
  17. Liahona

    Liahona Guest

    My kids therapist said that even with high functioning Autism Spectrum Disorders (ASD) kids that can read pictures are better. Its just that they think in pictures not words. It would be like trying to read a list in German when your first language is English. Even if you are fluent in German the English is still easier.

    What I do is have a dry erase boards with their schedules on it. I put the words on with a picture by it. Do you have an ipad? There are lots of apps for communication.

    I don't understand the people working with you not supporting other forms of communication. Even my very verbal kids know basic sign lang. It helps them start talking faster.