Today I’m reposting a blog from last year. I think it is important to remember there are many faces of Autism….and most of them don’t have it. The parents and siblings (and everyone else) who live with Autism never seem to be recognized. Yet without their support, the person with Autism would have so many more struggles to be included.
Originally posted on 4/3/17
A parent walks into the store, dragging her child kicking and screaming as other shoppers look on. A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.
A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.
A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking.
A parent enrolls her child into a typical school, because they know their child must be socialized and learn how to interact appropriately with their peers. A sibling introduces their friend’s to the child via Snapchat before inviting them over.
A parent worries every day that their child will be bullied because of their “peculiar” mannerisms. A sibling becomes an advocate for classmates who are different.
A parent tries medication, therapies and any other technique to try to calm their child’s explosive temper. A sibling hides in their room hoping the storm will pass soon.
A parent looks at residential schools for their child because they understand that they are out of options. A sibling prepares to a calmer home, but one missing a key family member.
A parent patiently performs ABA therapies in every aspect of their child’s life hoping to teach them how to conform to a society that will not accept them. A sibling begins speaking in the third person, trying to teach the child labels.
A parent will fight the school system in IEP meetings, PTA meetings and school committee meetings. A sibling learns how to advocate for themselves when they need help at school.
A parent will hug and comfort their child when the world around them becomes so overwhelming they begin hitting their head on the pavement. A sibling loses patience when the child pulls her hair.
This is what an autism parent and sibling looks like.
April is Autism Awareness Month. Most of you reading this know a child (or adult) with autism. You are aware of them, you try to be patient with them and you try to accommodate their needs. The hidden face of autism is the parents and siblings who love and are sometimes tortured by them.
The parent sits in the waiting room of the therapy center. The sibling tries to do their homework in a room full of distraction.
The parent calls countless doctors. The sibling learns how to use Google.
The parent enrolls the child into Special Olympics. The sibling becomes a peer mentor, even though they have never been enrolled in a sport on their own.
The parent saves their money to afford the therapy, food, tools, adaptive equipment their child needs. The sibling tells a friend they cannot go to a movie because they are afraid to ask their parent for the money.
The parent plans vacations around what the child can handle. The sibling becomes inventive on how to have fun.
The parent worries, a lot. The sibling acquires anxiety, begins losing sleep and does poorly in school.
The parent reaches out to friends, saying they need a vent session. The sibling sleeps over a friends house but never shares.
The parent looks for a cure for the child. The sibling accepts the child as they were born.
The Autism family rearranges every part of their life so their child/sibling can grow, be happy, learn and become a productive member of their community.
A parent loves their child without measure. A sibling loves with un-measurable acceptance.
The community is slightly aware of autism, they try to be patient but they cannot help looking in judgement at the parent who feeds their child M&M’s or lets the child use their phone in a restaurant to get thru the meal. The community is unaware of the financial burden an Autism family endures. The community is unaware that behind the smile and funny stories, a family is at the end of their wits. The community is unaware how many accommodations are needed in the family home. The community is judgmental and callous when told that the family is seeking residential care for the child who is no longer safe at home, or the siblings who are in danger. The community doesn’t understand that sometimes the residential choice is the best one possible, and that the child will grow more than can be understood.
The community would embrace the Autism family, if they knew the struggles that are won.
This is where Autism Awareness fails. They show the face of autism, but not the family behind that face. The family that loves the child with hearts three sizes too big. The family who dreams big dreams and puts no limits on their child. The family who gladly reallocates their budget, their retirement and their dream vacation so that their child with Autism can stay at home.
The Autism family is filled with equal parts laughter and tears. They are thankful for the friends that check-in. They are beyond grateful for the friends who offer to take the sibling on fun adventures. They are appreciative when the child with Autism is invited to birthday parties, cookouts and other events. They are pleased when a fellow shopper sends them a smile of understanding.
This is a face of an Autism family, one that is thankful for the community that has risen up to care for them.
So there are studies that show parents of children with autism have stress levels consistent with veterans with PTSD! Amazing families and amazing kids; all who need our support. 💙