A Day in The Life of an Autism Parent

If you have met a child with autism, you have met one child with autism....

This is a popular quote that helps to describe how very different all children with autism really are. Although the main symptoms of autism fall into a few categories, there are many other issues involved that affect our children. The following is a day in the life of one parent....(me) not a pity party, just a bird's-eye view...

It's 5:30 am and the alarm clock is blazing Guns N' Roses, Welcome To The Jungle! Startled out of a deep sleep, i think for a second, it's just a dream, the past eleven years were just a nightmare. Then i rub my swollen and blurry eyes to notice a pile of blankets in the corner of the bedroom.........NOT! 

We snooze, an absolute must!  I drag my weary body out of bed and pray to God for strength, promising i will be a better parent and person overall!  Praying that today will be the day that it gets easier, i find answers and my daughter gets better.

I slam a cup of coffee while i crush six pills, open three capsules and measure two liquid supplements to put into my daughter's breakfast.  I don't cook anything or open a box of cereal, i crack open a can of medical grade formula and feed her breakfast through a feeding tube.

Why the feeding tube you may ask?  My daughter is a gut and immune kid.  In simple terms, she has gastrointestinal issues, immune disregulation and severe nutritional deficiencies.  The feeding tube, although a drastic measure, saved her life two years ago.  Now i can get the nutrients and supplements into her body that help her thrive, learn and grow.

"Good morning poopsie loops", no response, "Momma loves you", nothing....

Three minutes later breakfast is done!  Then it's the door slam in the face....BAM!

After thirty minutes it is time to get my daughter ready for school.  "Good morning poopsi loops" nothing......"it's time to get ready"......door slam!

I have to assit my daughter with all grooming and dressing.  While going through the daily routine, she never looks at me!  I feel a sharp pain in my heart everyday. My daughter hates me, i feel tears well up in my eyes, then i stand tall and proceed.  It's autism i tell myself, the beast has a hold on her......

The screaming and body punching starts along with the incessant flapping, echolalia and loud vocalizations.  "What is it today'?  Is there something going on at school?  Is it candida?  How much longer can i withstand this?

We get ready to leave, i notice her lunchbox is gone!  I search the entire house, five minutes later i find it behind the tv.  This is my daughters way of telling me she doesn't want to go, how sad, she can't even tell me!

At this point we are already five minutes late and must race to the alternate bus pick up spot.  My daughter decides to throw herself on the floor and scream! "What?"  We do not have time for this......i drag her up and she decides to get stuck, not moving and crunching into a ball.  Finally i manage to convince her to walk out the door!

While on the way to the bus she screams and punches herself.  Please God, help my daughter!

I race to my paying job, it sucks the life right out of me sitting behind the wheel of a school bus for four hours a day.  My career as a hospitality manager ended the day my daughter was diagnosed with autism.  Thirteen years of blood, sweat and tears down the drain!

I race to Kaitlin's Hideout, ahh.......this is what i was meant to do, help other families experiencing the very same struggles i have for the past eleven years.

The peace doesn't last long.  I get a call from the school.  She has a fever of 99.5 degrees i am told, i remind them that 99.5 degrees is not a fever and that she is an immune kid!  They agree to keep an eye on her for an hour, that otherwise she is acting normal.  Sure enough, an hour later she is fine......  I pick her up at least three times a month early from school due to their misunderstanding of her immune and GI issues.

I get a call from my daughters pediatrician, the results of her most recent labs have finally been found.  I am told she is low in vitamin D, zinc and B6.  I tell them i have been supplementing her, tell them what dosage and ask how much i should increase.  I am told that i should just give her some more cheese daily!  What? Obviously the Dr. did not read her file, she won't eat normal, she is tube fed! I slap my face hard!  I ask very politely yet firmly for a copy of her labs to be ready by 1:30 pm for me to pick up on the way to my other job.  Apparently i have to figure it out myself tonight!

After another draining and life sucking drive in the school bus, we race to my daughter's feeding therapy session.  For two years we have been going twice a week to watch a therapist do her very best to get my daughter to eat.  Honestly though, i don't think we are getting anywhere and one more day of watching this lady wiggle string cheese on her nose and put pretzels rods behind her ears is going to send me over the edge!

I put my head down on the table behind them and drift off for a moment, i am exhausted, every muscle in my body aches, i need a moment.

Suddenly my daughter starts to scream and pound on the table, gritting her teeth and flailing about. What?  I shoot up and try to calm her, she pushes me away.  I try to hug her and she pushes me so hard i almost fall to the floor.  I end the session, enough is enough!

We get home and she runs to the bathroom, GUT ISSUE!  My mind starts to race, i realize that this might perhaps be related to her earlier temp increase.  I get her backpack and read the daily report, noticing that the handwriting is not familiar.  She had a sub today i decipher, i bet she had a food she wasn't supposed to.  Angry, i fret over the school systems unwillingness to administer digestive enzymes in the case that a forbidden food is ingested, now my daughter will suffer all night!

We proceed to the bathing, again, i must help with all grooming, hygiene and dressing.  My daughter relaxes in the bath while i start the evening chores, check emails, return calls and prepare for the next day.

Then the yeast beast arrives.  Due to the probable food infraction today at school, my daughter is most likely experiencing a gut yeast flare.  The screaming, door slamming and constant echolalia starts.  She is also pacing back and forth between the dining room table and the patio door looking out at the moon.  This continues for an hour and a half.

My daughter wants constant snacks and drinks, probably due to the yeast, it makes her feel better although it is not good for her.  I tell her water and dressing only, she screams, i explain her gut is sick, that she has candida.  What is wrong with me?  She doesn't understand that!

Three hours later and she is still pacing, screaming, grunting and door slamming! She is an eleven year old girl, she is supposed to be watching teen shows, experimenting with hairstyles and picking out her outfit for school tomorrow!

There is a very short bright spot in my day when my daughter points at me and says "mommy?" that means she wants to interact....yay!  She brings me to the bedroom and says "upside downs", which means she wants me to hold her up so she can stand on her head, most likely a self regulating strategy, i'll take it!:)

Things start to calm down, it is now almost 11pm.  I have nothing left!  I drag my drained, weary and achy body to the kitchen to prepare my daughters nighttime feeding.  I crush six more pills, open four capsules and measure out three different liquid supplements to be placed in another can of medical grade formula that i will push through her feeding tube.

We get ready for bed, i push my bed against the door for her safety, the only way i am sure she will not escape and get out of the house.  My daughter crawls to the corner of the bedroom floor and covers herself with three blankets (the pile of blankets i was referring to earlier) she has not slept in her bed for the past two years.

"Good night poopsie loops"...nothing...

"Momma loves you"...nothing....

I know enough now not to take it personally, although it never fails, every night i fight the tears!  It's that autism beast i tell myself...he has a hold on my daughter!

Peace, love and happiness always! 

~Lisa

Lisa is the owner of Kaitlin's Hideout, a play center for children with autism and a social, support and resource place for parents. www.kaitlinshideout.com

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