Autism Awareness Day just passed and Apraxia Awareness Day is in a couple of weeks.   Luke has Apraxia, Sensory Processing Disorder and Autism.  His Apraxia and SPD are severe, he may lose his Autism diagnosis someday but maybe not.  In any case, what we deal with primarily is Apraxia.  Very few really know what it is, but this is what it means to us.

It means at 4 months, noticing that my baby isn’t as physically strong as other babies.
It means at 10 months wondering why my baby isn’t crawling yet.  Other parents telling me “Oh he’s your first, he’s a boy, it’s normal.”
It means at 12 months rejoicing because my baby starts to crawl but the rejoicing is more of a relief than a true joy.
It means my baby starting to walk at 19 months.  See above for parental feelings.
It means going through 4 doctors to find out that my baby is head banging because he has something known as Sensory Processing Disorder, and that he’s just not “getting used to a new baby sister.”
It means my baby starting Occupational Therapy, Speech Therapy and Developmental Therapy at 20 months.
It means taking my son to private OT and ST while on maternity leave, and spending hours away form my newborn daughter each day.
It means hours of research in the middle of the night while nursing my newborn to find out exactly what all of these new terms mean.
It means people that we were previously close to pull away, even family.  We don’t know if they are uncomfortable or scared, but we are too tired to even find out.
It means sleeping through the night maybe once every 3 months.
It means resentment between my husband and me for who has to deal with waking up with my son every night when he wakes up having full blown meltdowns.
It means an Apraxia diagnosis at 30 months.
It means an Autism diagnosis at 30.5 months although the doctor’s are “on the fence.”
It means going through phases of obsessions with fans, air conditioners, finger crossing and satellite dishes.
It means being so thankful for my mom because she is one of two people that we can trust to handle our lives.
It means being torn between being happy for their “Aunt CaCa” that she’s headed to graduate school, and sad because we’re losing the only other person that we can count on.
It means hitting a plateau at 3 years old and changing to Applied Behavioral Analysis therapy which is 22 hours a week.
It means my husband taking on 2 jobs to cover the out of pocket costs of therapy.
It means that there is rarely a night where both mom and dad are home.  Subsequently, it means our kids being thrilled with excitement when both of us are home, even at the young ages of 3 and 2.
It means starting special needs pre-school a year early.
It means overwhelming guilt for favoring my special needs son over my daughter.
It means not making a big deal about any developmental milestones that my daughter achieves because I feel guilty celebrating.
It’s realizing that all of the anger and frustration and meltdowns are because not even I can  understand what my baby needs, although in his brain he knows exactly what he wants.
It means being completely non-verbal until age 3.5.
It means getting hit in the face, kicked, punch, bit mostly at 3am when he wakes up in a fit of rage and doesn’t go back to sleep for 3 hours.
It means my closest friends are other mom’s I’ve met on blogs or Facebook pages with kids who are similar to my son.
It’s having barely anything in common with my old friends.
It means almost no one in my family understanding even half of my son’s struggle.  Or asking.
It’s cringing inside when I hear other parents talk about their child who is the same age that won’t shut up.
It’s experiencing this word explosion that other Apraxia mom’s talk about and finally having the feeling of HOPE.
It’s having to really concentrate when my son wants to say “go shopping for root beer ” but it sounds like “go sopping woo bee” and being a constant translator.
It means having a pediatrician, developmental pediatrician, pediatric neurologist, ENT, Sleep Doctor, and 9 therapists.
It means the parking attendants at the children’s hospital knowing us by name.
It means not having the worst situation but also not having one minute go by without worrying if my son will be able to have a normal life.
It means absolute joy to hear my son say his first sentence, “More ice cream please.”

Apraxia is a neurological disorder.  Those who suffer from Apraxia know what they want to say but the brain has difficulty coordinating the muscle movements necessary to say those words.  It’s often misdiagnosed, or not diagnosed at all.

Please consider that this is a very real disorder before telling a parent that Einstein didn’t talk until he was 3.