Hopeless? Or Could it be Lack of Effort From the District?

We were told that our daughter was beyond learning to speak at the end of third grade and that she would have to go to using PECS exclusively.  The message was, she was beyond salvation and could never be taught to talk.  We were told that they had worked very hard for 4 years and since our daughter had made no progress she couldn’t be helped.  She would no longer (Ha! Like they ever had!) be given any therapy that worked toward talking but would instead receive instruction only on PECS (picture exchange communication system).  We reluctantly agreed (sort of), although we knew deep down that this didn't make sense, they hadn’t tried at all.  We pushed for teaching our daughter to say her name in speech, even being satisfied with a one syllable nickname since two syllables were so hard for her.  The SLP agreed reluctantly to include this goal.  The truth is before this our daughter was given collaborative speech (which equates to basically no speech) and one year of speech in which the SLP would not give our daughter any time if she was having a behavior - she has autism, of course she had behaviors all the time!  And what else they didn't tell us was that the school should have been giving us help to manage those behaviors so she could learn (but that's for another post).  So the one year that she was supposed to get speech therapy at school she almost never got it because the therapist didn't know how to deal with a child with behaviors!     

So, the district has never (well almost never) given our daughter speech therapy, and now they say they won’t give it to her and blame her lack of improvement for why they won’t give it to her when in fact they have never done anything to help her improve! 

When she changed schools, and was actually given small group speech and was learning to say some words; she actually said a few 2 syllable words which had seemed impossible.  She also started to say her name.  Her nurse and I worked with her on her alphabet, and she has learned all of the letters, saying most of the letters very clearly at this point.  This is the child who would not be able to talk.  She now says her name pretty clearly, and she has uttered phrases such as “Mondo, it’s your turn” and “I can help” with surprising regularity.  This is not an over zealous mom talking, this is based on reports from Megan’s teacher (the only one who has been doing speech with her for at least the last three months and probably the last three years except for her short time at another school).

Now, also to add insult to injury…. it is near impossible to get insurance to pay for speech and language services when children are in school because this is supposed to be covered by school.  In addition the insurance companies are writing into their policies that they will only cover this type of service for people who have had a stroke or surgery or they will cover only  a few sessions a year, even lumping together speech, occupational, physical, and any other kind of therapy you can imagine into the few sessions they will cover per year.  This leaves our children with NO OPTIONS for getting speech therapy unless we are rich and can afford $85-130 per hour for therapy.  Some states, ours included (CA) have added protections for kids with autism, but they seemingly don't apply to kids with more than one diagnosis, like autism and mental retardation, which correct or not is often assigned to many kids with autism.   


The only way we have found around this is to get an Independent Educational Evaluation.  I will post more on this in another post, but the basic concept is, get an expert in the field (district personnel are NOT experts) and have them do an evaluation of your child.  You can have this done at "public expense" which means that the district pays for it.  These experts (if you find good ones) will diagnose your child and will suggest how much and what kind of therapy would be helpful for your child based on ethical guidelines, not on how many hours they are allotted or allowed by the school district.  The district will try to tell you which experts you can and cannot use but the truth is I would never use the experts our district recommends unless I have also heard through people I trust that these experts are thorough and ethical.  The ones recommended by the district may be recommended because they will say what the district wants them to say.