Sunday, May 4, 2014

Larissa Update

Trying to get back into the writing groove.  So much has been going on here and I have been too tired to put my thoughts down.  Our foster baby is now sleeping 7 hours straight at night most nights so I am feeling a little more lively tonight.

I will start with an update of Larissa since I believe I promised one of those a while back.

Homeschooling is going along well.  We are taking math very slowly and plan on working on it throughout the summer.  She struggles that badly with it. I few weeks ago she went in for her evaluation with our neurobehaviorist and he remarked that her math delays are actually a disorder, he put 315.1 mathematics disorder in his list of diagnosis.  This was a new one for me.

 There was also mood disorder, ADHD and mixed receptive expressive language disorder and rule out encephalopathy.  He tested her for a little while and then she came in and sat on my lap.  She promptly fell asleep and had three seizures while we discussed the results.  How is she going to survive school if a few tests wear her out to the point where she can fall asleep like that?

He did note that she needs to take a stimulant medication.  The stimulants that we have tried in the past have made her very depressed. As long as we were homeschooling I didn't worry about it too much but he said that she really needs it, her processing speed is just too slow.  He said to ask the neurologist about which medication to try.

The visit went very well.  He has evaluated her on two other occasions and was surprised at how much better she is doing.  Having her out of school and on a mood disorder medication has really helped her.  He noted that her functional capacity was better and she did all of his activities, a first for her.  Some things were a little off.  She has problems imitating hand positions.  She also has a very poor working memory.  Oddly, her long term memory is better than her short term memory. He wrote that her neurological functioning is negatively impacted by her prenatal exposures and the possibility of a head injury.  He placed most of her deficits as coming from the frontal lobe and the cerebellum.  He even wrote me a picture....he always does.  He really thinks that she was dropped and it caused damage to the frontal lobe on the left region and the brain bounced back and damaged the cerebellum on the right side.  I always get a class in neurology when I visit with him. The 12 page report was sent to the school and her doctor.




Next we visited the neurologist since she is still having seizures, all night, every day.  Her Depakote was increased and she was started on Onfi, which I have never heard of before.  She has to go in for blood work next week and then back to the neurologist the following week.  If the seizures haven't stopped then she will go back into the hospital for more testing.  I have noticed a reduction in the length of her seizures, they are now very short.  One night over the weekend I need to bring her back into my room so that I can determine where she stands on the seizures.

She still tends to wear out very easily.....


The neurologist suggested that her doctor put her on Focalin for her ADHD.  I haven't had any kids on that medication so we will see how she does on it.  We visited her doctor and got the prescription.  I filled it last week but still haven't given it to her.  I want to wait a little bit to see how she does on the Onji.  I have noticed that she seems a little more sad at times that I didn't see before and it concerns me.  I am giving her some time to adjust to it.

I went to the school for an IEP meeting for Anthony and they talked about getting Larissa back into school.  As I was leaving, the school psychologist said that we could meet at any time for her to do an IEP and then she said "it isn't as though she didn't qualify last year".  Huh??  Then why weren't they willing to offer her services.  I didn't even know what to say to that one.  I am not sure where I stand on the schooling issues.  Dr. West believes that she will have the same issues that she had before, he supports her homeschooling.  Funny, her neurologist and family doctor think she would be best to stay at home as well.  However, the school psychologist thinks that she won't learn to cope unless she is put back into the school environment.  Larissa is torn, some days she wants to go back and other days not.  She is afraid to go back.  I am not sure what to do at this point but still have time to think about it.  Fellow homeschoolers, what is your opinion?  Does keeping a child out of school with anxiety issues hinder their ability to cope in the future?


6 comments:

  1. I taught for nine years, and now stay home with my kids. I am not a homeschooler, and usually don't think it's the best idea for kids. However, in Larissa's case, if it's working for her, she's happier, she's able to sleep when she needs to, and her doctors approve, I think she's where she needs to be. There are plenty of other ways for her to interact with other kids and help her anxiety. I don't think she's at a place that she needs to be forced to "cope." Her medical and emotional needs come first. Just my thoughts. She is so beautiful, and seems like such a wonderful young lady. Good luck with your decision!

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  2. Wow! Such good information you got this time.
    Focalin. My M&J both take Focalin and I have been very pleased. Both of them are gaining weight again, which is great news. M is very emotionally balanced on it, and J says he feels like his brain is organized. I'm quite pleased.
    In regards to the anxiety/coping, no!!! I would not put her back in school. She's only 8. She doesn't need to learn how to cope in school. She needs all the freedom from stress that she can get, and the patient, individualized attention and flexibility you are able to give her. My sister had serious learning disabilities and anxiety, and my mom homeschooled her all the way through. Her first formal schooling experience was her first day of college. At that point she was able to handle the pressure of formal school, partly because of her age/maturity, and partly because she'd had enough therapy/tutoring/treatment that she was academically ready. I think homeschooling is great for Larissa. She'll learn to cope with the anxiety in time. But for now, I think you're wise to have her at home. Especially if the doctors agree! It has been my experience that a lot of the time, school staff--though well-meaning--don't understand what they're dealing with. Especially when it comes to trauma.

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  3. i am not a homeschooler so I'm not sure if this counts. But--perhaps a part time situation. A few days a week at school and a few days at home. To test the waters so to speak. Perhaps that's a possibility? :)

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  4. Maybe she could go a half day. Perhaps the easier classes like social studies, music, art etc and then do the tough stuff at home with you. So she could practice socialization, but not be overwhelmed. Or even just go for the specials--art, music, PE.

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  5. I am not a home schooler; I am a public school teacher. However, I am a big supporter of options in education. I think if home schooling is working for her, there is no reason to think she won't develop into a regular, we adjusted adult one day. As a matter of fact, if the home schooling is what she needs, then it should HELP to get her to that place eventually. Go with your gut. You know your child way better than any school psychologist ever could.

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  6. I homeschool six and though I have one very socially awkward child, I don't have any with special needs. My kids have no problem being involved in activities with their peers- homeschooled or not. I think life provides plenty of opportunities to learn to cope- dance class, sports, day camps, summer camps, overnight scouting activities, large group classes/activities. If the home environment is helping her to succeed, why put her in a pressure cooker? She can learn those skills in her own time as you choose and as her interest leads her. It seems to me she would be more motivated to 'cope' when it's something she really wants to do, and that her body is benefiting from the rest of not being forced to copy every day from 8-3.

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