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View Diary: Advice please (58 comments)

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  •  I am so sorry (3+ / 0-)

    I have nothing specific to add except
    to trust your gut that he needs services NOW

    Speech develops early. Seems to me the earlier problems are corrected or aided the better the outcome. (i worked with early intervention kids with many different kinds of issues and am amazed at the progress they make that young)

    Since you are not mired in abject poverty, I surmise, but not rich either, you might investigate getting a STUDENT to try to work with your son if you can't find ANY other sort of program he'd be eligible for. If you have a university with a (grad) program in speech/language pathology speech therapy etc you might be able to find somone. You could call the shchool see if they have a program even.

    Big hospitals that treat kids have speech/language pathology and occupatioal therapy etc. Probably you know this but the people at the children's hospital would know of any programs (social services perhaps would know if there isn't a speech dept at the hospital itself). That dept would have social workers who could tell you what people of your income level could do. He may need OT as well.

    The younger you can get services for kids the better. Some parents who can afford it hire private therapists.

    I am sure you will get better advice and I don't have time to read what you already got but wanted to say what I know just in case.

    Autistic kids in my area can go to Children's Hospital get diagnosis and then treatment through them...outpatient PT OT speech or they connect you with services. If you do not have the "medical" dx, try to get in. In my area that would trump the assesment of the educational system. Wouldn't allow them to say your son doesn't need help.

    Time matters for autistic spectrum kids. I hope you can get him one on one floor therapy or ABA (applied behavioral analysis) if they (medical) think it would help. Some kids can be quite affected and ABA jumps them ahead. Need to go into grade school with behavioral issues and reactions and communication as under control and as good as possible so they can learn optimally and not fall behind educationally or socially. Cann't make up for lost first few grades sometimes

    •  The frustration is (in part) (4+ / 0-)

      because we DO have the medical dx. School is arguing that for special education services he can have a medical dx and still not meed educational model criteria.

      His fire, their mommy. I never wanted to be different, I just wanted to be me.

      by littlefire on Fri Dec 21, 2012 at 06:39:56 PM PST

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      •  Have you joined the Autism Awareness (2+ / 0-)
        Recommended by:
        FloridaSNMOM, bigjacbigjacbigjac

        groups yet? Especially on Facebook, they are constantly posting good articles, stories from other parents, and will help you to connect with the community so you aren't feeling alone and isolated.

        Having a network of peers who are all "been there, done that" helps enormously... it's one of the things I cherish most about my kid's school - we're all in the same boat, even with different diagnoses, so when we do things together with our kids, everyone gets it, no need to apologize or smooth things over, we're all copacetic.

        Luminous beings are we, not this crude matter. ~ Yoda Political Compass: -8.50, -6.46

        by Cinnamon on Fri Dec 21, 2012 at 06:48:33 PM PST

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      •  how infuriating! (4+ / 0-)

        sorry I missed that.
        they think themselves more knowelgable than a doctor.

        Can medical people review the educational people's conclusions and say they are not adequate? Is there a way you can dispute their conclussions or appeal? (sorry if I missed that as well just racking my brain....) Are you clear on exactly why they think (or say) he does not need help...ie are you crystal clear exactly what criterea he'd need to have shown to GET help and that he in most times DOES meet that critera and that their snapshot just didn't capture it? Of course you have to keep coming from the place of ...you just didn't see it. Have to come from the place that their criteria are correct. Are you clear o what their critera are?
        are their superiors to go to beggingly but respectfully remiding them that autistic spectrum kids fall behind if things aren't addressed early (have references in your letter siting that) and that you KNOW your son meets their criteria but for some reason he DID NOT in that snapshot. Say that private help is far beyond your means (if it is) and as his parent you feel you MUST advocate for him because his very life's quality is at stake because of his age.

        Probably you've done this beseaching already...was wondering if there is someone above who can overturn decisions that you can write to.
        Many if not most who get into these fields we have to remember originally do so because they care about kids and want to help. Even if they become worn out and jaded (as often happens by sheer volume of what they do and sheer number and how so many parents seem to put their kid first or are entitled they think everyone is coming from that place). If there is a person not yet beseached your words might be able to reach that person and tweek that part of them that wants to help and does not want to KNOW that some kid IS unfairly being denied services by their organization.

        best of luck for you. It could really be that this is one of those Y points in a child's developement where he could go in one on direction or another (say that) that organization those services could literally be the key for him having fullest life possible (flattery but possibly true) You are SURE they did not get a good snapshot (if so) of your son.

        if you are absolutely sure your son needs services and understand the exact details of what they would have to see to deny them you will be in best position. Have to act AS IF their process of evel was valid. See, when you point out they only got a snapshot for two hrs it's not enough that hooks egos because that's how they evalutate EVERYONE so if they were to grant you that they'd have to admit their eval process was not workign well and that many kids might fall through. They prefer to think that YOU are mistaken not their process. IF you instead say that you thinnk they missed things becuase in those two hrs the child happened not to show his problems maybe they'd hear you...if it's not too late

        sorry if this isn't useful just ignore me. I love kids and work with them. I see other people's kids on one of those Y junctures or what could be one I feel a sense of urgency. When people have speech or OT jobs where they see a lot of clients (MDs can be like this too I worked in healthcare) their jobs seem routine and they forgte the urgency for any one child a bit I think unless you can break through to them

        •  I'm disputing on the basis (4+ / 0-)

          of social skills and nonverbal on that basis, that I feel he DOES meet the criteria but it just didn't show clearly enough during the evaluation. Where I'm stuck on is speech, they refuse to accept the fact that he was a late talker and even now has articulation problems as qualifications and insist that he isnt far enough behind to qualify in the verbal section. What I don't understand is why they say it has to be all three to get assistance... Im going to try their director of special services which is apparently the next level up

          His fire, their mommy. I never wanted to be different, I just wanted to be me.

          by littlefire on Fri Dec 21, 2012 at 08:33:42 PM PST

          [ Parent ]

          •  Actually, this problem isn't uncommon. (2+ / 0-)
            Recommended by:
            FloridaSNMOM, Cinnamon

            I've heard of several instances where therapies are working well, then the school wants to claim there is no more 'demonstrated need' for continued services.

            The hardest thing is that they tell you they care about students, & they really don't & you can't make them. And they lie way too often.

            I also second the use of tape recorders for ANY talking to school personnel - tell them ahead of time. If they don't consent, don't talk - schedule an official meeting, where they can't refuse with prior notification.

            I had to threaten to bring an attorney & sue; other parents have had to go to civil damages against the district for job loss (time away from work to deal with melt downs, medical costs, etc.) everything you can think of.

            In CA we have Protection & Advocacy to help parent s & families, I don't know bout TX. I do know one family that moved because they could get no services in TX for their low functioning child in the 1990s.

            I don't know if this link will help, http://www.tea.state.tx.us/...  

            but it will definitely get you used to terminology. When I had to advocate, knowing the terminology was a powerful weapon - they hate when you can force them to act with their own language.

            Best of luck & remember to take care of yourself as the battle is a long one.
            Also, parent support groups are golden.

            Something that doesn't make good sense, makes bad sense. That means someone is being deliberately hurtful & selfish. Look for motives behind actions & words.

            by CA wildwoman on Sat Dec 22, 2012 at 12:35:32 AM PST

            [ Parent ]

      •  now that sounds like BS -- is it Aldine ISD, (0+ / 0-)

        by chance?

        LBJ, Lady Bird, Anne Richards, Barbara Jordan, Sully Sullenberger, Ike, Drew Brees, Molly Ivins --Texas is no Bush league! -7.50,-5.59

        by BlackSheep1 on Sat Dec 22, 2012 at 08:52:20 PM PST

        [ Parent ]

        •  Actually (1+ / 0-)
          Recommended by:
          BlackSheep1

          Its Tomball ISD.. which generally has a decent reputation.. for everything EXCEPT special education services.. for reasons I am not becoming familiar with it would seem.

          His fire, their mommy. I never wanted to be different, I just wanted to be me.

          by littlefire on Sat Dec 22, 2012 at 09:47:04 PM PST

          [ Parent ]

          •  Aldine's budget's still in recovery (0+ / 0-)

            from having to gut and rebuild several buildings after Allison flooded the universe down there ... that's way before Rita / Katrina / Ike ...

            Tomball. Hmm.

             How far are you from Houston's Medical District?

            LBJ, Lady Bird, Anne Richards, Barbara Jordan, Sully Sullenberger, Ike, Drew Brees, Molly Ivins --Texas is no Bush league! -7.50,-5.59

            by BlackSheep1 on Sat Dec 22, 2012 at 10:09:41 PM PST

            [ Parent ]

            •  We are (1+ / 0-)
              Recommended by:
              BlackSheep1

              about 45 mins to an hour from the Med Center, (I know cause thats where my older child's pulmonologist is and I have to take her to Texas Children's a couple of times a year

              His fire, their mommy. I never wanted to be different, I just wanted to be me.

              by littlefire on Sun Dec 23, 2012 at 05:51:18 AM PST

              [ Parent ]

              •  Ok, so you know the area well. Can you ask (0+ / 0-)

                your other child's pulmonologist who they'd recommend to do a baseline exam with this child? You're not looking for a doctor -- you're looking for an evaluator ... a therapist or behaviorist.

                LBJ, Lady Bird, Anne Richards, Barbara Jordan, Sully Sullenberger, Ike, Drew Brees, Molly Ivins --Texas is no Bush league! -7.50,-5.59

                by BlackSheep1 on Sun Dec 23, 2012 at 08:58:42 AM PST

                [ Parent ]

                •  I may be able (1+ / 0-)
                  Recommended by:
                  BlackSheep1

                  to get her to refer us over to TCH's Blue Bird clinic, but since they are ignoring the evaluation by the psychiatrist I don't know if I can get them to listen to another evaluation?

                  His fire, their mommy. I never wanted to be different, I just wanted to be me.

                  by littlefire on Sun Dec 23, 2012 at 12:49:49 PM PST

                  [ Parent ]

                  •  having a 2nd opinion makes their position (0+ / 0-)

                    less tenable.

                    LBJ, Lady Bird, Anne Richards, Barbara Jordan, Sully Sullenberger, Ike, Drew Brees, Molly Ivins --Texas is no Bush league! -7.50,-5.59

                    by BlackSheep1 on Sun Dec 23, 2012 at 01:22:02 PM PST

                    [ Parent ]

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