Monday, February 20, 2017

Do's and Don't

For years there have been things said to me from strangers and well meaning friends and family for which I  found myself devoid of words, either filled with outrage or utterly dumbfounded that such insensitivity could be said.  It's high time I write this post in the hopes it will save others the pain I have experienced from such comments. and hopefully bring greater sensitivity and understanding to all.

1.  DON'T  ask if doctors know if he/she will be high functioning or if he/she will be able to live independently one day.

First off, consider how ridiculous this question is.  Can anyone honestly accurately predict any persons potential?  How would you feel if I ask just how successful or independent you child will be 20 years from now?  Honestly I know plenty of neurotypical children who don't leave home by then, does this mean they have failed?  Perhaps you might say there are extenuating circumstances.  Well lets just call our child's struggles 'long term extenuating circumstances'.  And like all circumstances, things can change, there is always new technology and therapy, living aid centers. Remember, all children, typical and non, can change, they can grow and surprise us in ways we cannot see as a parent .  First and foremost they are a being with untapped potential, their 'disabilites' are not who they are, they are simply the struggles they will have to work on throughout life.
Bubbalicious is absolutely fascinated by the guitar.

2.  DON'T minimize a special needs parent's fatigue. 

You cannot begin to imagine how lonely it is for a special needs  parent.  There is more work, longer days, endless phone calls, paperwork and meetings.  This is just the physical aspect, consider the number of worries we might have, "Is our therapist a good fit?  Is the waitlist worth the change?  What new activities/innovations, etc are out that might help with his/her tone, speech, feeding, social interactions .... the list goes on and on my friend.  Then there is the financial aspect - how much, when is it due, what is really helpful versus needful.  What might need to be set aside for this child's future.   And then if there are typical children at home there is the guilt of not being able to be there enough, to give them typical life experiences because said sibling struggles with ....

No parent of a special needs child ever wishes to list the endless responsibilities - there's the nagging fear that says we aren't loving our child enough if we dare verbalize these things.  But if you find us rolling our eyes because you cannot find 5 mins to message someone or hop on Facebook, understand that 5 minutes inattention (we are not talking about being alone, that doesn't exist in our world) doesn't come without some serious repercussions.  When we say we are tired we are tired in ways you don't know exist.

3.  DON'T put us on a pedestal.

I hate hearing people say things like, "You're amazing, I could never do what you do."  because it's simply not true.  The challenge of a special needs child came and just as with all life experiences.  We simply find ourselves doing it or dealing with it because we have no other choice. (aside from just rolling over dying)  No matter what you see we feel the inadequacies daily, hourly at times.  Hearing such 'compliments' seem to only underline our failings to ourselves and worse, we feel less able to express our struggles in an already lonely place.

Whether it's a belief in a higher being (I personally call this God) or unknown resources within our species, we are all capable of amazing things.  It's just that some of us have been placed in these circumstances and we are simply trying to do our best just as I believe you would do.  In the end even if you still think this, don't express it.

Until we received Bubby's diagnosis of autism we never really understood why he loved to swing and spin so much, it fills an actual physical need for him

So what can you do. 

1.  DO learn  to listen. 

Frankly it's won't be comfortable to listen to a special needs parent.  You're bound to want to 'fix' things that can't be fixed.  Perhaps there is a new therapy or diet you've heard of, use words like, "Have you heard of ... Would you think such and such might help?"  but never push beyond that.  In all likelihood we've probably heard through our many online forums or we are budgeting for another expense or too overwhelmed with paperwork to get to that point. 

Just listen.  We don't need the 'bright side' pointed out to us or platitudes such as 'God only gives us what we can handle' .  We NEED a friend, one who will just allow us moments of grief, complaint and fear without judging or fixing us and our families.  When we find the moments of courage to really express these things to someone it means so that we are heard.

2.  DO find practical small meaningful ways to serve us.

"Call if you need anything," is nice and all but hardly helpful.  Honestly we are working just to get by the hours and each day.  Our schedules revolve around therapies, appoinments, we always need something but can't think of it in the moment or feel too abashed to ask. It's the endless little things that get to us.  I can't begin to tell you how much gratitude I feel when I'm chasing my child down for the millionth time that day when someone takes the time to reassure the siblings left behind, to talk to them and plays with them to make them feel special.  When people offer to watch my special needs son so I can shower longer than 3 minutes, or come over and look for ways to help put my house in order. 

I've had someone offer to take the kids while my husband and I take a vacation and I'll be honest, as sweet as this is, it is more overwhelming to me than anything.  The planning, the work, then dealing with the aftermath for a child who struggles just going to a different store let alone missing his/her parents for a day or two is too much.  It's rarely convenient to serve us.  The lack of consistent presence makes it hard to you to know our needs, for our children to be comfortable with you.  It does take an investment of time and an energy to REALLY BE THERE.  Those that have, truly become the village we love and feel profoundly grateful for.

3.DO try and get to know our special needs child as a child first.

Not all Down Syndrome children are always happy, not all autistic children are unable to socially engage.  They are each individuals.  Just because I have a girlfriend who loves shoes and make-up it doesn't mean all girls will be just like her. 

Getting to know this individual may mean you find yourself doing atypical things, whether it's lying on the floor with them staring at the patterns on the ceiling, repetitively playing with an object they enjoy or imitating a sound they find pleasing.  It will rarely be a question and answer format, eye contact or touch may often be difficult but it doesn't mean they don't want to make connections too.  The need to connect is innate in all living things and is especially deep and rewarding in those who are isolated whether by diagnosis, sensory overload or simply being misunderstood. 

The work that it takes to make these relationships grow, both with the individual and the parents cannot be measured.  I have tried to convey to those who have served me and my family how much they have a place in my heart, no matter how short the duration of our time together.  They carry and lift us and ease my burden and I am blessed to have them in my life.  They are my angels!


  1. Beautifully and powerfully stated, my friend. I sure love and admire you.

  2. Wonderfully worded. We miss your family. love, Abbey