Parenting, Uncategorized

Open Letter to Parents of Autistic Children

Dear Moms and Dads,

Today was one of those days.  You know the ones I mean, right? Where nothing seems to go right and you are in danger of losing your sanity?  Oh yeah, I’m there right now.  I am in the middle of a mess making, meltdown throwing, tears all around tough day…and that’s just me!  All joking aside, my kids certainly have their own moments, but controlling my response is a key part of minimizing their traumatic experiences.  Three of my kids are Autistic and that means their brains process things differently.  Sounds, lights, emotions, and sensations are intensified for them and when it all becomes too much, they crash…hard.

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Sometimes that manifests itself as a meltdown, other times it’s as though they tune the world (and the people in it) completely out.  Both responses are difficult to deal with as a parent, especially if you have other special needs children in the family.  So, how do you hold it together?  How do you make it through those tough days?

Well, sometimes you just…don’t.  Some of those rough days just become an unexpected hiatus from the routine.  When nothing goes according to schedule and you spend much of your time trying to help your child recover from a sensory overload, you may feel that you’ve failed.  However, I’m here to tell you that you are doing more important work!  Some days, you and your child just need to take a break from the “schedule” and regroup.

I know, I know.  Some of you are mortified at the idea of an unplanned hiatus, of breaking the routine and schedule.  I get it, I really do!  Often, our kids thrive on structure, knowing what to expect gives them reassurance and peace.  However, when your world is spinning and your brain cannot make sense of it all, the last thing you want to do is therapy or study.  Take the break, work on meeting sensory needs, and reestablishing an equilibrium.  In my opinion, that is the most important work for a child, managing their own sensory needs.  Finding that “happy medium” which allows them to function far surpasses the importance of household chores, homework, or planned activities.   Remember, above all, as overwhelmed as you may feel, your child needs you to remain calm and help them find peace.  Sometimes, that even means stepping back and removing yourself from the situation, if it’s appropriate.

While I have your attention, I’d like to add this bit of advice.  You, as a parent, have a unique opportunity to teach your child how to advocate for themself.  Helping your child discover their triggers and learning ways to cope is by far the most productive way to prepare them for the future.  If you can equip your child with the ability to express their needs (be it verbally, through picture cards, hand signs,  speech device, etc), you give them the power to advocate for their own needs.  If your child cannot communicate at all, you are their voice.  As their parent, you must be the one to make sure those needs are respected.  If your child communicates to you that they are uncomfortable with a therapy, you need to step in.  If a teacher disregards your child’s IEP, you need to step in.

438225de039b83002172026d68f8de65--autistic-children-children-with-autismOverall, here’s my point:  allow yourself to truly follow your child.  Not just in the subjects that interest them, but also in their mental, physical, and emotional path.  Know when to let them lead and guide you on their path.  One of the many tenuous lines we parents walk is knowing when to comfort or guide and when to step back.  It’s not a clearly defined line and it often moves without warning.  Do not let fears of the future destroy the present!  No one knows what the future holds for your child, not even the doctors, therapists, and teachers working with them.

Know this, parents!  YOU make a tremendous difference in your child’s life, even if you don’t see the progress, it’s there. Your child needs you, even if they push you away. Be confident in the knowledge that you are loved, even if your child doesn’t show it the way you’d prefer. No one can fill your role quite like you do. Be strong, be patient, and find support from a friend or family member when you’ve reached your limit.  Do not be afraid to ask for help!

Your child is a person, with thoughts, emotions, and spirit.  Remember, this child is unique, has individual gifts and talents, and brings a special flavor to this life all their own.  Trying to force your child to conform to a neurotypical standards will create even more stress and lead to burnout…for both of you.  Instead, focus on meeting them where they are and encouraging self-awareness and self-advocacy.

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