Secret Thoughts and Fears of Special Needs Parents

Everyone has fears about raising their children.  That is one thing that parents of typical children and parents of special needs children share.  Is my child happy?  Will my child make friends?  How safe is my child?  With parents of disabled children though these questions take on a whole new level of stress.  Along with these questions are fears that we as special needs parents have that we rarely admit out loud, even to ourselves.  There are fears and thoughts that we keep hidden in the backs of our minds because the darkness of them can be too much to bear.

We chastise ourselves for having thoughts that are anything less than noble when thinking of our children.  We feel guilt for some of our secret feelings.  We all have those thoughts and feelings though at least once in our lives – usually more than once. 

Here is a list of our deepest, darkest fears and secret thoughts along with suggested ways to deal with them:

    1. We worry what will happen to our children should something happen to us. – One of the things that is constantly in my brain these days is what will happen to Ry when his dad and I are no longer around? Will our child be taken care of in the same way that we’ve been taking care of him/her?  It is terrifying to think what life will be like for our children when we are no longer around.  For many of us this is the thought that will keep us awake at night should we let our mind focus on it for too long.

The main thing we can do with this one is plan, plan, plan.  Set up a special needs trust or ABLE account and start saving money for the day we are no longer there to support them.  Make sure we have a plan of who will take over guardianship when the time comes.  This, of course, will have to be updated from time to time as life changes occur as they get older.  Right now, I am working on something akin to a letter of intent where we lay out a plan for who will watch over Ry when we’re gone; what services he currently receives; his routines; his current abilities and support needs; etc.  It’s taking a lot of time and effort, but it gives me peace of mind that at least I’m doing everything I can to make sure that transition goes as smoothly as possible for Ry.

    1. We worry about our child dying before we do. – This is the flip side to the last point. Many of us have children with medical issues that can be life threatening.  Even without the medical conditions our children are more prone to dying from accidents than typical children.  There are times that we literally go into our child’s bedroom at night just to make sure they are breathing.  As hard as life can be, we can’t imagine the world without them.

I wish I had an answer for this one – a way to be prepared, but I don’t.  All I can think is that we have to have faith that our children will be safe under our care.

    1. We worry about our child being abused, especially if they are non-verbal. – I think this one is on all parents’ radar, but for those of us with special needs children it is especially terrifying. Our children may not even begin to comprehend what is happening to them and if they are non-verbal, will probably never be able to communicate what is happening to them therefore making it that much more likely that it could go unnoticed.  We hear horror stories of children in schools being knocked around or verbally abused.  It breaks our hearts to think that our children may be suffering and we don’t even know it.

As hard as this one is to stomach, we as parents have to trust that our children are in the hands of good people when they are in someone else’s care.  That does not mean, however, that we shouldn’t be vigilant about what is going on with them.  We usually can tell when something isn’t right with our kids – when they start acting a little odd or as if something is bothering them.  We must pay attention to what our gut is telling us in these kinds of situations.  I’d rather start an inquiry and be wrong than let it go and have my child suffer needlessly.

    1. We worry that we aren’t good enough at being their parent. – There are times that we question everything about what we are doing for our children. Are we giving them the right support that they need?  Are we advocating for them enough?  Is the reason they are disabled our fault?  We all come to a moment when we doubt ourselves and our roles as parents of our special children.  Even though people who support us tell us often that we are amazing, we still hesitate before giving ourselves any credit.

We are not going to be perfect parents.  No one is.  We must give ourselves a break on this one and tell ourselves that we are the best parents we can be.  Sometimes that means screwing something up and that’s okay.  As long as our kids are happy and as healthy as they can be, that’s what matters in the grand scheme of things.

    1. There are times that we don’t like our children. – This one causes such guilt, but we all have felt it at one point or another. We get tired.  Not just tired, but exhausted.  In those moments we get weak and wish that we didn’t have to deal with our special kids.  We wish with all our heart that everything was different.

We need to realize that no matter what others may think of us, we are not superheroes all the time.  We are humans with breaking points and that is okay.  We know that we don’t really, truly mean it.  We just hit moments where we are so fed up with all the work and stress that we hit a wall and just can’t for a bit.

    1. We have a deep envy of those with typical children. – Every now and again when we hear other parents talking about how well their children are doing in school or with activities our blood will boil just a little bit. Why do they get to enjoy their children so much while we have to work so hard for and with ours?  Why are they so blessed to be living happy, normal lives and not us?  Honestly, sometimes we even get jealous of other special needs parents based on the level of severity of our children.  Why does mine have to be so severe when her child is mild?

The truth is all parents have their own set of struggles.  True, some probably not to the extent that we do, but that doesn’t make their struggles any less to them.  Besides, they might just be dealing with deeper issues we know nothing about.  Everyone has a secret or two that they don’t want the world to see.


We need to face these thoughts and fears and bring them out into the open so that they lose their sting a little.  We should embrace all of what we as special needs parents face on a day to day basis and realize that we are not alone in our worries or feelings – even if they are scary and put us at risk for judgement by those who could never understand.  We know where we stand with our kids.  We know that we love them beyond measure and would do anything for them regardless of the feelings we try so hard to ignore.  We need to accept that we truly are only human.

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