‘What does love look like? It has the hands to help others. It has the feet to hasten to the poor and needy. It has eyes to see misery and want. It has the ears to hear the sighs and sorrows of men …… That is what love looks like.’ - St. Augustine

Sunday, September 28, 2008

Alphabet Soup, Without a Spoon

I really want this blog to be about my daughter primarily. I want others to understand her better. Well, what I really want is others' complete unconditional acceptance and love for her, but that's not likely to happen in this lifetime. So, instead, I'll settle for at least opening up some minds to maybe making room for her, not being so quick to judge. For myself, I'd love for other grown-ups to stop thinking they know better than me when it comes to my daughter. Because they don't. I know this will be a lifelong struggle for me, but I'm willing to struggle with daily it if it means enlightening even one person.

So, on to the soup. I thought I'd start by telling you about Anastasia's alphabet soup. Well, that's what it looks like when you lump all her diagnosis together. And, don't get me wrong, I do not post these to garner sympathy. I simply want others to get a better picture of my daughter's unique challenges. Educating others about these things is important to me. As overwhelming as they seem when put down on paper, in the end they are just labels that help to explain my daughter, but they do not define her.

Let's see, there is, of course RAD (Reactive Attachment Disorder, for any newcomers), and then the PTSD ( Post Traumatic Stress Disorder), and then the SID (Sensory Integration Disorder), and now her doctor is suggesting some OCD. That's alot of letters for one little girl! There are also the non-alphabet ones like her Nystagmus, which is an involuntary eye movement which usually results in some degree of visual loss. This also affects her reading ability. Then there is the Rumination Disorder. Rumination disorder is an eating disorder in which a person brings back up and re-chews partially digested food that has already been swallowed. In most cases, the re-chewed food is then swallowed again; but occasionally, the person will spit it out. This disorder is caused by early neglect, which causes the child to engage in self-comfort. This is causing her remaining teeth to rot and also causes alot of discomfort in her throat. So far, there is not much that can be done for this.

There are many other minor concerns, but the above are the ones that make her life most difficult. Even the most educated people in our sphere sometimes underestimate the power of these issues over my daughter. Case in point: I heard my daughter's school would be conducting a fire drill last week. From experience, I know that these drills elicit a very intense trauma response from my daughter. She cannot even think when they happen-- she works completely from a place of fear. Well, I tried to let the school social worker know that, but she was quick to acknowledge she had a handle on the situation, and I trusted her. I assumed that she would take Anastasia out of the building before the drill. I was wrong. When I came to pick her up later that day, the social worker wanted to speak to me at length about Anastasia's 'inappropriate behavior' during the fire drill. What did my daughter do? She refused to listen (she couldn't listen), she 'talked back' (she was terrified) she kept chattering (common RAD symptom when dysregulated), and once outside, she barreled into the parking lot away from the masses, instead of 'following proper protocol' and staying with the group (of course she did!)

Now, this woman is a clinical social worker. I respect her. I have a close working relationship with her, and I informed her to the best of my ability, even giving her books on RAD and trauma response. I don't think she read them. So now, she has informed me she is putting Anastasia on a behavioral contract. Why does she not understand that my daughter cannot contract to behave through a traumatic experience, such as this fire drill? It is not humanly possible for her. Think for a moment of being in the midst of a crisis. Your life is in danger. Do you do your best thinking then? No. For Anastasia it is far worse.

I thank God for Heather Forbes and her books for teaching me the science behind my mother's intuition. Science proves my daughter cannot think during these episodes. (I'll post more on this later, don't you worry...)

Anyway, I am becoming preachy, which I do not want to do. I need to go pick her up from school shortly. (She is on a modified program). I'm meeting with the social worker next week, and am bringing Anastasia's therapist along. I'm hoping she can help bridge the gap. Please let me know what you think. Any good ideas of how to get the social worker to see things from my daughter's perspective?


  1. your blog looks totally cool. I found you on Heather's..

  2. Thanks CJ! I like yours too, and can't wait to hear more about sean :)

  3. Keri,
    we lived through this with Geoff in elementary school. first and second grade.

    your school psychologist is a ninny. nas should have been removed from the situation prior to the event. putting her on a behavior contract is ridiculous and insulting. she can't and she won't be able to handle this situation. even with time and maturity. they were wrong to subject her to it. it's not teaching her or helping her learn to cope.

    with geoff, they found that if they told him the morning of the drill and asked him to keep it a secret, and then gave him a position of "power" or control, like being the person who waits at the door and counts the kids and then reports to the teacher -- he was much better at controling his fear. Being IN CONTROL of a little SOMETHING helped him with the noise and the fear that was rising in him with what was going on.

    now he's in 6th grade and they still make him the monitor, but they don't warn him ahead of time. he does well, and is good at telling others where to be and what to do once they get out there.

    giving Nas some sort of control over the situation may help her a little bit. chastising and punishing her after the fact fixes NOTHING.

    call me if you want to talk. but you know my experience and feelings. non neuro-typical children cannot be expected to behave like the neuro-typical. treating ALL the same doesn't work.

    i love you.

  4. Ugh, the dreaded dealing with school personnel. We cannot even get our school's social worker to meet with us. As far as I know she is an elusive ghost that even the kids don't know. But I have a TON of experience dealing with many other people that don't get it. What you are doing, bringing your therapist to meet with the worker, is perfect. My suggestion would have been to get a letter from the therapist but that is even better. In fact, you could still get a letter of explanation from the therapist for the school to keep on file for anyone to read who is new to working with your daughter. Our therapist created a nice letter for us. The tricky part is getting the school people to actually read it :)

    Some of them say they have been "doing this for such and such years" and "know what to do". Ha ha ha ha ha.

    We also held a little inservice with all of my daughter's teachers last year and I presented an overview of RAD to them. I also went over some of the other abbreviations but RAD is what is most foriegn (sp?) to people. Quite a few people said afterwards, "I had a kid like that one year and nothing worked and now it all makes sense!"

    Amusings idea was great, too.

    Best wishes on your meeting! I hope it goes well! --Torina


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