Ups and Downs

The doctor called and said there was an abnormality in Ava’s EEG results.  However, he is getting a second opinion from his colleague who is an epileptic specialist.  But I won’t get the verdict until Monday.

He put Ava on Intuniv, a new ADHD medication which helps with sleep.  I feel comfortable with her on Intuniv because it is geared towards children.  The first night she slept but was very irritable when she woke up and went back to sleep for another 3 hours.   I think she had a tummy ache from the medication.  I decreased her dose by half and last night, she did not go to sleep until 11:30 pm but slept until 6 am.  She took a nap at 1:30 for 2.5 hours.

The positives in all of this are that Ava seems more focused in therapy.  Yesterday she said “ladybug” and “mama” referring to a picture of me.  Last night when I put on a DVD she did not want, she brought me the remote and said “Mama”.  Wow.  She never did that before!  And today in therapy she referred to herself as “A-wah”.  Double wow! Moments like that give you hope.  Parents of autistic children cling to the small things – little miracles.  Little glimmers of hope.

I wish this would all straighten out.  I so want my daughter to hit a stride with sleep, therapy, and treatment.  I feel like I am drowning in the chaos sometimes.  I hate that she is a guinea pig – we are testing medication on her.  But sleep is so important and we have to strive for a regular sleep cycle that allows her brain to function properly during the waking hours.

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Kim Cristo
Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.
Kim Cristo

Kim Cristo

Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.

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