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.

 

sensory blog hop

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!


Dear Autism Mom: It’s just hard.

Dear Autism (insert your child’s diagnosis here) Mom:

It’s not your fault. 

If you are going through your internal list thinking of what you did, where you went wrong and how you ended up in this place.  It’s not something you did.

It’s not something that went wrong.

You are here and it’s not your fault.  It’s just this hard.

As mothers we have this internal dialog that constantly wonders this, is it just me?  Is this my fault?  We have this deep need to make it better, to nurture it away and to be the best, to be everything for our child(ren). 

We think about, why this is so hard and turn inside ourselves that it must be us. 

We get judged by those who are ignorant in our life, that this because of our parenting and this just adds fuel to the fire.

But, I want to make this very clear.  It’s not your fault.  You cannot prevent Autism (or insert your child’s diagnosis here).  You cannot cause Autism. 

You’ve read every article on the HOW, the WHAT and the WHY and you still find yourself thinking that it’s just you.

It’s just that parenting Autism is really hard. 

Did you get that…. It’s just that it is REALLY HARD.

It’s the endless challenges. The constant needs. 

The lack of sleep…. The Why?

The constant work on social skills, on appropriate behavior, and on trying to get them to eat something other than french fries (or insert the only food they currently eat).

The constant need to touch, to move, to spin, to never sit still and sometimes roll across the floor because it just can’t be helped.

The trouble with emotions, with being out of control. A body that flails and fists that form. 

It’s just HARD.

It’s the constant reminders and the never remembering the simplest task.

It’s the hard of the quietness in the lack of words and conversation that you wish was there.

It’s the hard of the grief that you find in this place. 

It’s just HARD.

And you dear Autism Mom, whether or not you know it yet, is that this hard has grown you into something amazing.  This hard has grown your heart to love more, to break more and to not be messed with.

It’s made you into a mom that even though you feel like giving up you never will.  You are fighting the toughest battle you will ever face.  Make peace with the hard.  Make peace with the challenges.

This is hard. 

Find your tribe.  Don’t ever forget to ask for help.  Remember, that you are more amazing than you know.  You are doing all the right things, you aren’t giving up.

Sometimes, it’s just harder than you ever imagined it would be. 

And you are not alone in that.   

One Simple Trick to being a Confident Special Needs Mom

When you start suspecting your child might have challenges sometimes fear and anxiety take over. The “what ifs” set in and take residence, before you know it you are settled into a place of personal distress. In my experience, a lot of those concerns are valid. We wouldn’t have had the help that we have if it wasn’t for my pushing and my concerns.

However, there is a point you need to get to as a Mom on the special needs journey where no matter what the diagnosis, no matter what challenging behavior that your child is exhibiting you meet it without fear of the future. That takes confidence.

It might take you a few years to get there. But I promise you, you will find your confidence.
Recently I was talking with another Mom who was suspecting sensory challenges. Her concerns were very valid but her fears had completely over taken her.

Concern for what her child would be like during school.

Wondering if she was going to be wild and out of control during Mommy and me classes, while the other toddlers sit nicely in their Mom’s lap.

What if she is always loud?

What if I can’t get her to stop climbing the furniture?

Will she always want to be upside down?

While these all sound very typical concerns even for a neurotypical child, there’s a place where fear comes in and logic goes out.

Many of these concerns go back to thinking about how it makes me look as a parent. Does it make me look like a bad mom when my child is loud? Does it make me look like I can’t parent my child who is running around the room? Does my life look like a mess as my living room is full of sensory products?

I suggested getting rid of the coffee table and adding a trampoline, to me this seemed like a very easy suggestion, but when fear is in control there is no way this would seem like a possibility. This would require letting go. Letting go of having a perfect home and accepting that you have an active child that needs to get that energy out.

Hopefully she will get there, it just takes time.

As the years go on, you learn to let go. That’s the trick to building your confidence as a special needs Mom… letting go.  

You let go of the “what ifs” and the concern of being different.

You grow into a place of acceptance.

You find joy in being greeted with bear hugs that almost knock you over.

Although, the chaos is overwhelming you find peace in having a house full of love.

You let go of the wondering about the future and start to look at how far you’ve come. How far you’re child has come.

You don’t even think of the “what ifs” because you are so focused on the now and what you have to get through today.

You don’t worry about having a trampoline in the middle of your living room with not a lot of other furniture because it makes life work. It gives you room to breathe.

So how do you get to this place of letting go?

Look at what areas are trigging your fear and anxiety the most. Honestly ask yourself how valid they are. Are they a valid concern for right now, with your child at this age or is this a concern for the future?

Remind yourself to focus on the now.

Look back at last month, last week or even last year. What has your child accomplished? Remind yourself that you probably felt like you were failing then, you survived that season and you will survive this season too.

Honestly ask yourself, am I concerned about ________ more because of how it makes me look? Does it make me look like a bad parent, spouse or person?

More than anything this process of letting go takes time. Every win you have and every affirmation on your parenting you get will help build your confidence and help you as you continue to let go. You just have to start somewhere. Make a choice to let go where you need to today and you will be one step closer to being a more confident Mom.

 

sensory blog hop

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!


When the storm gets bigger…

In case you’ve wondered where I’ve been over the past two months, I’m back today to tell you. I’m still here… barely.

You know that one person in your life who has an amazing connection with your unique child, may not have all the answers but listens to you when you are at the end of knowing what to do and feel like you can’t go on.

That person has been my Mom.

At the beginning of February my mom was diagnosed with cancer. Losing my Mom has been one of my biggest fears in my life. She has been the one who has helped me through our parenting journey and I don’t know how I would have made it through all these years of aggression without her.

That day in February forever changed my life. What proceeded was something my family could never have imagined. We ran to doctors everywhere, meanwhile we struggled to take care of my now immobile Mom. My mom went from an active busy life to having almost 4 of us home with her at all times trying to take care of her care needs.

She was the picture of health, she exercised and she ate the best food (home grown, including the chicken).

The day we had to hospitalize my mom, one of her biggest concerns, was what I would tell Miss S.  She cried as she said she was hoping to be her Grandma for a really long time

In just a few short weeks, we were sitting in a hospital for days, as we waited for her final breathe.

It’s something that still feels like a bad dream.

I can’t believe it is real.

I whispered to my Mom that we would be OK. That her granddaughter (Miss S) would be OK.

Right now we are still trying to find the ground beneath us. It has changed me in ways I never expected and has turned my life upside down. I hope to find words to write again.

I always worried how I would handle something bigger in our already crisis life. The past two months has shown me how much more I can handle, how much parenting a child with special needs has equipped me to handle life’s toughest storms. The years of communicating with doctors, medical professionals and insurance prepared me for the past two months.

So, to you weary mom who is in the middle of parenting and feels like you can’t go on. You never know what your journey is teaching you and how it is equipping you. When you are in the middle of it, it seems so dark and isolating.

Being thrown into a bigger storm has showed me that all my years of feeling like I was barely making it through was really strengthening me.

Hold on tight, it’s a wild ride and believe me you get stronger everyday!

We got a puppy! To help our daughter with special needs.

So we’ve got some big news this month. We’ve been looking for a year and we were lucky enough this month to finally add a puppy to our family! We weren’t exactly planning on a puppy we actually had said yes to a 3 year old rescue but the rescue bit one of the foster family’s children so she wasn’t able to be placed in our home.

We had really been thinking about this and Sensory Dad especially wanted this. We set our sights on a Boston Terrier, I didn’t want anything too big. Sensory Dad wanted a dog that would play. Boston Terriers are known to be really great family dogs and our vet said in all her years she’s never heard of one biting! YAY! Boston Terriers also have short fur which means no grooming, which our last dog had to be groomed so we were excited about that. Miss S loves the way her fur feels and loves to pet her. She loves to carry her around Stella has done really well with Miss S’s sometimes not so gentle ways (we are working on “Gentle Hands!”).

So we crossed our fingers, drove 600+ miles and surprised Miss S by telling her that we were adopting a puppy. She was surprised, we met a lady in a parking lot holding our 2 pound new bundle of joy.

Meet Stella.

It’s been a little over two weeks and I’m not going to lie it has been very overwhelming but we are hoping that the puppy training phase goes by quickly and the benefits far outweigh the additional stress!

Although we are still in the honeymoon phase we have already seen the benefits with Miss S. Stella so far, helps her focus on something, gives her company and listens to her read. I wasn’t really prepared for the training we need to do with Miss S. We are working on teaching her how to “be a tree” when Stella starts trying to get her feet. Last night we decided that right now we will need to always be present when Miss S is playing with her so we can work on training Stella bite inhibition.

It’s a lot. Surprisingly I feel like special needs parenting has prepared me so much for puppy parenting. Puppy schedule…no problem. Behavior management…easy peasy.

Right now, it’s less sleep than the little that we were getting already, lots of accidents and never ending snuggles.

But the other morning I was talking to Miss S on the way to school about her aggression and she told me that at home right now she doesn’t want to scare Stella. So we’ve seen her keep her cool. I’m not sure if this is good or bad, but we will take it.

When Miss S is upset Stella has been a great to have Stella as a snuggle buddy and she loves to lick tears away. Licking was one of things I didn’t know how Miss S would handle and she loves it. It puts a smile on her face and she starts to giggle.

Do you have pets in your home that help your special needs child?