The Silent Suffering of a Special Needs Parent

In the early days of struggles with our daughter, I would comment about how challenging this was.  A family member was shocked at my comments and told me that I shouldn’t say things like that.

Every doctor appointment we went to, for as small as a sniffle, I would ask them about the struggles we were having in our home.

I sat in multiple Early Childhood parent meetings and complained of our challenges while no one said anything similar. 

I vented to my mom the battles that we had and she silently listened but didn’t know how to respond.

My husband saw me not leaving the house and encouraged me to try, not knowing it was easier to stay home.

And no one knew the depth or the reality of what was going on in our home or in my heart.

As a first time mom I struggled with knowing if this was normal only find out years later that much of our struggles were far from normal.

I blamed myself for a lot of the struggles we experienced during those years.  I thought it was just me, I thought I was just not good at motherhood.

No one knew how the simplest things in our family were the biggest battles. 

No one understood that leaving the house took hours of preparation and lots of tears (from both of us).

No one knew that our home was living in crisis mode. It wasn’t just difficult, it was we are barely surviving this.

No one seemed to understand that getting my child dressed caused her to scream in pain.

My friends didn’t know that I had bruises up and down my arms and legs from being bit, kicked and hit daily.

No one knew that we were so sleep deprived, some days I could hardly function.  And that this lasted for years, not just a season.

Once school started, no one knew that some days I felt like I could hardly make the short drive to pick up our daughter because I would have panic attacks, at what would happen after I picked her up. 

No one knew that we had alarms installed in our house and could lock every single room and deadbolt all the exits to keep her safe.  We lived in crisis. 

Talking about these things with those in our life who weren’t trained therapists became something that I couldn’t bring up.  I had tried in the early years and learned that unless you are living this, there is no way someone would understand.  So, I learned to be silent.

I learned to hide what was happening in our home and I learned that I wasn’t alone. 

I learned that there are too many of us, who hold our secret challenges to ourselves.  We’ve been told things we shouldn’t have instead of being met with, “How can I help?”

If you’ve tried to share your struggles and haven’t had a good response, I am sorry.  I am sorry for the support that you didn’t receive.

If you know someone, or suspect someone is parenting a special needs child, reach out to them.  They won’t reach out to you. 

If you struggle with knowing how to help them, ask them what would help them.  Even think about basic needs for living and find ways to help relieve those areas. 

If you know someone who is parenting special needs, let them know that they can talk to you.  That you might not understand, but that you want to know.  You want to know their world because you care about them.  You want to sit with them and acknowledge that you don’t want them to silently suffer.

Even the smallest thing, like surprising someone with a cup of coffee can make the world of difference to a silent sleep deprived mom.

 

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6 thoughts on “The Silent Suffering of a Special Needs Parent

  1. Christine

    I know many of us can certainly relate to this post. My arms look so ridiculous I’m thinking about having the scars bleached (summertime is coming and long sleeves can be brutal). It’s true that we all have to train ourselves to ask for help. I’m still a student at this, but I’m trying. Thank you for writing this.

    Reply
  2. Mommy Catharsis

    I have written a very similar post on my own blog. I understand acutely what you are saying. I can’t offer you a cup of coffee, but I can offer you a genuine, “I get you. You’re my people.” So glad I joined the Blog Hop and found your blog!! 🙂

    Reply
  3. Kmarie

    Im sorry it was like this for you. Was for me too the first few years…but slowly I built a good support system but it took a lot of fight that at first was not there due to exhaustion. ANd it felt isolating. People do not understand until we communicate and even then not so much…unless speaking in their language and context. It took my own reasonable parents 4 years to accept my childs diagnosis and then mine – simply by watching and having discussions over and over. I would never want to go back to that. Again, Sorry you were unsupported and this was a beautiful post of encouragement for others.:) It gets better. I promise. I found certain ages were easier.

    Reply
  4. Carrie

    Sadly, I think your experience is true for far too many families with special needs. I know it’s been true for ours at least. It takes courage to let people know the crisis you live in, every single day. Thank you for sharing this! Hopefully the more we share what this experience is really like, the more compassion and understanding people will offer. Xo

    Reply

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