She Wanders

Check my heart rate, please.  It’s been a tough week.

Well first, I had a near breakdown this week at the neurologist’s office.  Ava’a sleep has been awful.  I have bronchitis which I am trying to kick.  Ava was sick last week as was her dad.  None of us sleep.  She will wake around 2am and stay awake until 6am.  Then, she wants to go back to sleep and wake up around 10 or 11 am.  But therapy prevents her from doing that.  So she is a cranky zombie all day.  Sometimes she crashes at 4pm and wants to sleep until 7pm.  But then she is up until midnight.  It is an endless cycle of weariness, fatigue and confusion.

So the neurologist suggested a new medication, an anti-depressant used for sleep issues that has few side effects, but is not recommended for those with heart issues.  Ava has to have an EKG before she takes this medication.  I have a friend, an adult male who on this medication and he said it works well.  However, the neurologist said it is not generally used on young children and he has NEVER given this to a child this young.

Tardive Dyskinesia – Risperdal may cause tardive dyskinesia, a disorder resulting in twitching and involuntary muscle spasms in the face and body. Tardive dyskinesia often is permanent. Although the effect is rare and occurs more in older women, it has been documented in children as well.

Neuroleptic Malignant Syndrome – Neuroleptic malignant syndrome is another condition associated with Risperdal use. This severe disorder is characterized by muscle stiffness or rigidity, high fever, rapid or irregular heartbeat, increased perspiration and confusion.

Symptom Masking – Risperdal can hide symptoms of certain illnesses, allowing them to progress and worsen. These include brain tumors, intestinal obstruction and Reye’s syndrome. Reye’s syndrome is a sometimes-fatal condition that most commonly develops in children after a viral infection (and is also associated with aspirin use).

High Blood Sugar – Young children taking Risperdal may develop high blood sugar. Signs include unusual thirst, increased urination and fatigue. Risperdal use also is associated with weight gain, a risk factor for diabetes.

Other Side EffectsRisperdal can many other side effects in children, including agitation, anxiety, restlessness, constipation, indigestion, nausea, vomiting, dizziness, sleeping problems, rapid or irregular heartbeat and greater sensitivity to temperature extremes.

So that’s a big NO for Risperdal.  Thus, we are trying the anti-depressant after a visit to the pediatric cardiologist for an EKG.

So on my way home I had a near breakdown.  I wish I didn’t have to deal with this!  WHY does my daughter have to be put in this position?  As other moms are worried about sending their kid to nursery school 2 days a week, and spending too much money on school supplies, I am worried that the medication I give my daughter may harm her for the rest of her life.  I know it is selfish and things can be a lot worse — but it’s MY child.  I don’t want her to suffer.  I see her get frustrated in the middle of the night when she tries to go to sleep and can’t stop herself from stimming even though she is so tired.  Why my little girl?  How will the decision I make now affect her health for the rest of her life?

And then, one of my worst fears materialized.

Ava went to sleep at 11:40 pm last night.  She woke up at 3am.  She was up until 6:30am, I think.  She slept until 10:45am.  I got very little sleep – as did my husband. Ava and I stopped at the local children’s shoe store after our class, which was having a big sale today.  When I walked in, the door was wide open because they wanted to get some foot traffic in the door.  They were having a cockamamie promotion where you could win a TV if you bought shoes, participated in a trivia contest, blah blah blah.  The store manager was at the front making people sign in and guarding the prizes.  I had to sign a form when I walked in the door, holding on to Ava at the same time.  After Ava was fit for shoes, the salesman asked me a question and I turned away from Ava to answer.  Ava got down from her seat and ran out the door in front of the store manager who was busy guarding the prizes for the promotion.  My eyes were away from her for 90 seconds.  Within that time, she ran out the door, across the street and into the parking lot of the supermarket.  She was stopped by a woman who had just gotten out of her car.  Luckily another car saw Ava dart out and stopped. I looked down, noticed Ava was gone and ran out of the store in a panic.  The woman who caught Ava said, “She just ran out in the middle of the street.”  I said, “I know, she’s autistic, she has no sense of where she is.”  The woman said, “oh.”  I never thanked her  I feel awful.  I was too busy crying — and in shock.  I sat on the bench in the store and cried for about five minutes.  I couldn’t talk to anyone.  I just held Ava, who was fine.  Little kids were staring at me.  One mom came up to me and said, “My son has ADHD, he used to do that all the time when he was her age.  I know how scared you are.”  I was comforted and touched by her kindness, she was so sweet to reach out.  She turned to the kids who were staring and said, “Dylan used to do that all the time — and I got scared, too just like that.  Mommies get very scared when their kids run off like that.”

I paid for Ava’s shoes.  The store manager came up to me and said, “Are you OK now?”  “Yes,” I lied.  The store associated said, “Well, at least you got 20% off!”  That did not comfort me.  He offered her a sticker.  I declined.  I left the store and cried some more in the car.  I was shaking up until the Klonipin I took an hour ago.  Now I am tired and have a bad headache.

Ava is a runner, as are most autistic kids.   She has no sense of direction, where she is going and no sense of her body.  She does not know if I am with her or if I am 100 miles away.  This scares me.  She could get hurt, be abducted or get hit by a car.  I keep thinking of the little autistic girl who got lost in Florida and was found in the swamp, still alive, still wandering.

A few friends recommended a sensor key ring in case Ava runs away again – which will hopefully never happen.  I also thought of getting a wrist leash.  I have a backpack with a tether, but she hates wearing it.  The sensor is in the shape of a bear and the key ring has an alert in case she wanders.    When you have a child you have to have eyes in the back of your head.  You have to be hyper-aware.  But with a child with special needs, you have to be omniscient.  Ubiquitous.  And have awareness beyond your five senses.  With such little sleep, I barely know where I am!

But I am going to get her these items just as a precaution.  And with any luck, they will never be of any use.  Below is the link in case anyone is interested.

Child locator

Kim Cristo

Autism Obsession

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.