Monday, September 10, 2007

Just Who Do I Think I Am?

Do you ever have days where you think you just don't stand a chance? Days when you just want to throw up your hands in defeat? I'm having a month like that.

Overall, I would say that I'm a fairly positive person, particularly so when I write or talk about Oliver and autism. In my opinion the real tragedy about Autism is that it is so hard to find positive stories about it in the media. Except of the "I saved my child through the strength of my love and my steely determination" variety. So I try to do my little part to spread positive messages. And that is one reason I'm so happy for the blogosphere: real people telling real stories that show the tremendous variety of human experience in every life.

But lately I've been finding it difficult to remain upbeat.

When we decided to keep Oliver out of school this year I felt pretty good about that decision. We'll work primarily on communication issues, I thought. And so when the school district also agreed to chip in for some speech therapy each week, I welcomed the idea. A few weeks ago the SLP called and we made an appointment and discussed what goals we would try to work on with Oliver this year. I also asked that she do an initial evaluation since we haven't had one in several years. As our appointment date grew near I was hopeful that the SLP's input would help give some focus to our efforts at home -- you know, professional guidence. But I didn't realize that I had such high expectations until they all came crashing to the ground half-way through our appointment.

And let me just say this, I like the SLP and I'm trying not to jump to conclusions about how useful her input is going to be. But it was hard to find anything positive at the end of that first hour. First, she was sitting less than a foot from Oliver while she was administering the evaluation and she was talking at the top of her lungs as though he were deaf. Later, she asked if there was any kind of food item that she could use to get Oliver to sit in his chair. She repeatedly grabbed Oliver's chin and tried to turn his head to look at the photos she had laid out in front of her. And at the end of the session she said that she thought she should concentrate on teaching Oliver common vocabulary by getting him to label pictures.

But here is the thing: I had already spent a great deal of time explaining to her my opinions about Oliver's problems with language and why I think verbal behavior isn't the right approach in our case. I have never really understood why Oliver can't -- or won't talk -- and no one has ever been able to explain it to me either. One "expert" told me that Oliver wasn't talking because he wasn't MOTIVATED to speak. That realization completely flabergasted me until I realized that it was completely wrong. There are so many times when Oliver very clearly wants to communicate with us. When he is desparate to communicate something but just can't. And then there are exchanges like this:

Me: Oliver, what is this?

Oliver: perfing.

Me: These are glasses, Oliver. Glasses.

Oliver: Glasses.

Me: What is this?

Oliver: Perfing.

Me: No, they are. ..?

Oliver: Mmm. (From our studies of the phonemes, this is the sound of the letter M.)

Me: No.

Oliver: T. (Again, the sound that the T makes from our phoneme studies.)

Me: They are glasses.

Oliver: Glasses.

And let me just say that Oliver knows what glasses are. Sometimes he can produce the word on the first try and sometimes he can't. If you pointed at the glasses across the room and said: "Oliver, bring me the glasses," he would know what you were talking about and bring you the glasses. So, in my opinion, Oliver's language problem has more to do with being able to retrieve the right word when he wants to use it. Is this then a neurological issue or a speech issue? Or both?

I don't know the answer. And that is just the point. I don't understand fully what the problem is but I do know that the issue is one of communication, not just speech, and that teaching him to label pictures is like using an eye dropper to water a tree.

Maybe the SLP is on the right track and since I'm not an expert in Speech Pathology I can't say much about that. But I do know, after watching her work with Oliver for an hour, that she is looking at him purely as a non-verbal, autistic child with a set of challenges that are sure to get in the way of her teaching him to talk. She is not looking at him, she is looking at how he "presents". So a big part of me wants to just cancel the services all together. I don't think it will help. I think it will be stressful if she continues her agressive way of working with him.

But then I stop myself and have to ask: Just who do I think I am? I'm NOT an expert. I don't understand why Oliver can't seem to find the words when he needs them. And I certainly don't know what else I -- or anyone else can do -- to help his brain make the connections that it needs to so that he can decode language and understand the nature of communication. And then I get all wrapped up in self-pity because not only do I not know what to do but I also don't believe that any of the experts know what they are doing either.

I'm going to give the SLP a chance. I'm going to sit side-by-side with them and make sure that she respects his personhood and his unique needs and I'm going to refrain from judgement in the short term.

And in the long term I'll try to keep from throwing my hands up in the air. Because that surely never helped anyone.

12 comments:

  1. Christine,
    It is a tough road, isn't it? But here's the thing--you are Oliver's mother. You are the one who does know what he needs. I understand wanting to give the SLP the benefit of the doubt, but don't discount your instincts.

    Good luck and keep us posted. Sending hugs and good wishes.

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  2. Anonymous11:07 AM

    you ARE and expert-on Oliver. you either need to work side by sde, and have her value your input as much as you value hers, or don't do it. Oliver will sense it. giving it a chance is good-but dont hang on too long if it is not right.

    what about a SLP who does neuro/bio feedback? they always seem to have some good insight. seem

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  3. Sigh...I hear you loud and clear, as usual I can totally relate to what you are dealing with. Really, we do need to get our two boys together one day. Maybe the two of them can communicate in their own way. They just sound to be so much alike.

    I have been told that Andrew's inability to communicate has to do with motivation so many times by various teachers and therapists, and I always try to explain to them why I disagree. Ok, maybe there are occasions where Andrew is more likely to be able to retrieve the word "candy" as opposed to the word "glasses", but I still don't think that it has to do with motivation as much as it has to do with the ease of the word candy. For one reason or another the vowel/consonant combinations in certain words just seem to be easier for him to say. And there are just days when for whatever reason (Oh, how I wish I had the answers) most words are just so difficult for him to say that he withdraws and gives up. You can just see by the look of pain on his face how difficult it is for him to retrieve the words and sounds some days. I have been calling out "APRAXIA!" to therapists over the years and I have gotten so many mixed responses. "Oh no he doesn't have Apraxia, listen how clear he can say the words". Then last year he had a SLP who heard me, understood him and I just loved her. So did Andrew. Unfortunately she is on maternity leave. Now he has someone new this school year who I have yet to meet, but based on one note home in his communication notebook, I already have a sense that she doesn't understand him.

    Please trust your instincts. You definitely know Oliver better than anyone. If you are doubting yourself, go back to watch that amazing video of him laughing so sweetly and connecting so amazingly with you. I know I have gone back to watch it myself, and it has made me smile and feel good every time.

    I think you and I need to go back to school to become SLP's. Seriously, I am thinking about it. Maybe I will find some answers if I do.

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  4. I agree that you're an expert on Oliver and that your opinion on what feels right (or wrong) is more valuable than anyone else's. You know, of all the blogs I read written by autistic adults, I've never once seen them mention "motivation" or lack thereof as their reason for not using their words. They mention that using words is difficult, that it's more difficult on some days than others, etc. But never once have I seen motivation mentioned yet that's what the experts like to say.

    When we were going through our most recent round of evaluations with India, one of the evaluators said something really asinine like "she hasn't really mastered language because her older brother probably speaks for her whenever she needs something" and I wanted to smack him.

    I wish every professional that saw India had an autistic child of their own at home.

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  5. Ohhh Christine. It pains me to read posts like this because it takes me right back- I remember what this was like. But it pains me too because Henry is a pretty good talker now, and I feel like I should be able to preach to all of you who have younger boys, and tell you "here's what I did and it worked like a charm."

    But I don't know how I got to this point! I have certainly never been as educated and pro-active as you and so many other moms. I just kept taking Henry to speech therapy, watching him cry and scream and pinch the SLP through the window, thinking "what the hell good is this doing?"

    I can't confidently say that 5 years of speech therapy has done something for him, or whether just 5 years of growing up has done it. I have just always believed the voices of authority enough to keep putting my child in the therapies...

    And now he's 8 years old and when Kate says to me "I'm hungry" Henry chimes in "me too." That happened last night, and Kate's eyes just about popped out of her head.

    I'm sorry that you're feeling discouraged. You're trying to do an awful lot by yourself. Just give it time.

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  6. Christine- You are the expert when it comes to your child. As for the therapist who said Oliver was not motivated, I don't buy it. From the short clip I watched of the two of you, Oliver seems to be quite motivated and connected. Perhaps it is something along the lines of apraxia? Have you had him checked by a neurologist? Hang in there!

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  7. My son said more words, gave more eye contact and attention when he was doing occupational therapy than speech therapy. He needed the vestibular input as the lingo goes.

    I agree with the other commenters, too. Trust your gut. I've been through a lot of therapists until I got the right fit - nothing personal- just looking out for my boy. It's paying off so far.

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  8. Wouldn't that be like saying to someone with CP, your not walking because you are not motivated?? Give me a break... if only we would put in more work and determination:)lol

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  9. Yup, what every other mom said...YOU are the expert on Oliver. TRUST YOURSELF. You don't have to have the degree/credentials to know what your child needs. It's worth giving this SLP a chance but only if you are honest with her about your frustration.

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  10. My experience with SLP's so far is that they are so used to working on articulation that they kind of freak out when they get our kids to work with.

    I had an SLP tell me (recently!) that she thought one of the twins was just echoing words without understanding them, because he comes out with them so rarely. Luckily I talked her out of this belief.

    Maybe you should show her some of your RDI videos, so she can see who he really is. I am making a movie to show my SLP.
    Hang in there and hope it works out.

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  11. I'm really sorry you're having a rough time right now. John also is unable to communicate but I know that he wants to as well. There is something physical, neurological I guess, that prevents him from forming the words. I've seen him try.

    I went to a conference awhile back and the speaker, Dr. Vincent Carbone (http://www.drcarbone.net/), really impressed me with his version of ABA with its empahsis on "verbal manding" -- helping nonverbal kids communicate in other ways -- with signs or pictures, etc.

    Good luck with your SLP. I know from our experience with ours that the loud talking must be taught in SLP101 -- it definitely grabs my other, already verbal, child's attention. It would not work, though, for John. Anyways, you know Oliver best and you're an awesome mommy and advocate. Hugs.

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  12. I don't know if I am much for advice either. But I do know that you are the expert on your son. I would not bow down to a SLP just because of their degree. Sure she might know some stuff but she does not know Oliver.

    I think the motivation issue is kind of a double edged sword. I think motivation is a factor but not so black and white that it boils down to "candy" vs "glasses".

    Look at RDI. You get more language out of him during these activities because it is fun and engaging. For a child who has difficulty producing the word, it would have to feel pretty meaningless to use all of your energy to produce a sound for this SLP who is yelling words at you and acting like you don't get it.

    So I guess I see the motivation as a factor in how hard he might want to work at accomplishing the word. If saying the word is part of a fun game with mom and we are smiling and giggling...he is going to be motivated to fight to retrieve and produce the word.

    Perhaps a starting point with the SLP is to educate her on Oliver and get a relationship established between her and Oliver. Someone refers to it as "pairing". I don't know if that was RDI or PRT. Either way, she needs to become a "fun" person that Oliver would enjoy being with if she is going to be effective. The "fun" people in our lives have been the ones who moved mountains!

    Either way, it isn't black and white AND you are the expert on Oliver!

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