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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.   

For When Your Family Doesn’t See Your Child’s Special Needs…

I’ve never had the kind of relationship with my Mom or either of my parents for that matter that I would have wanted. In fact, growing up I expected to not really talk to them in my adult life. However, things changed I ended up staying in closer physical proximity to them than I expected.

My parents were very excited when we announced that we were adopting. They supported us during our journey and were there to pick us up from the airport. There were days that were so bad during the toddler years that I would call my mom and ask her if she could take Miss Sensory for the next day, because I needed sleep. And I am so grateful that she was there.

But there’s a bigger, deeper part of parenting that I wish my parents were here for. Typical parenting (from what I hear) is pretty challenging, but parenting a special needs child we fight battles we never knew existed.

And one of those battles comes within our own families.

We fight for disorders that appear invisible to those we are related to.

We take each comment to heart. We stand up to those who are supposed to love us the most.

“She’s normal.” “That’s typical kid behavior.” “They’ll grow out of it.”

“You need more discipline.” “There’s nothing wrong with her.” “It’s Ok.”

“That’s normal.”

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These comments hit us deeper than anything anyone else says. Because our families are supposed to be the ones who support us the most and know us better than anyone else. But, that doesn’t always happen.

I wish I could sit with my parents and tell them how much I feel like a failure.

I wish I could tell them about our daughter’s new diagnosis and the treatment plan.

I wish I could tell them about the grief and the challenge of not thinking of her future.

Or comparing her development to another child her age.

We never get too old to need our parents. I still do.

Maybe someday, they will see.

That my child is different than other kids her age.

That I can’t discipline this out of her.

That her challenges aren’t quirks, or accidents, or her feelings getting hurt.

That I could have used their support along the way.

That I am amazing at this.

That this is not normal parenting…

Because she’s just not a typical kid.

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The first day of school and a child with Sensory Processing Disorder.

It started this morning with the bouncing, she bounced from thing to thing. Thrashing her body on anything near, trying to hold her anxiety in. It took us quite a while but we got her through her visual map of everything she needed to do and have this morning. We got her safely in her car seat and could breathe a sigh of relief. Here we go. On the way we played the rhyming game the entire time. It focused, it calmed, it connected.

I pulled into the school overwhelmed by just finding a parking spot, thankfully Sensory Dad was along today and I didn’t have to think about it. We walked hand in hand down the corridor with Miss Sensory safely in between us. Since it’s hard to keep her near us in parking lots, as we tell her she needs to keep us safe. She does better when she’s in control and so we give her a job and she takes it seriously. Once we enter the doors you can feel the chaos surrounding the building. Her classroom is right around the corner and we quickly move that direction.

Only inside the classroom the chaos is more common, more present. There’s so many kids and parents, it’s hard to get around to even get to her cubby. She clings closer to us and I can tell she’s shut it all off. I can tell she’s overwhelmed by a room full of people, withdrawing inside herself. I can tell she’d rather run and find someplace to hide. I can tell she’s attempting to be ok with the noise level in the room, when inside her head it feels like someone turned the volume on high.

We are greeted by one of her friends’ older sisters who was excited to be her helper today. She asks Miss Sensory a million questions and Miss Sensory answers none of them. She tried so hard to help her, to get her to her desk and get her some play dough. But Miss Sensory couldn’t respond, couldn’t focus couldn’t find her way through.

I got down low and asked her quietly if she wanted pink or purple dough, she said pink. I was so glad to see her engage, answer a question and be excited. I could tell this was tough for her when no one else could.

I could tell that this isn’t just her being shy or scared or first day jitters. This is more. I could tell her nervous system was screaming for help and I can tell that most of the ‘typical’ world won’t be able to see that her nervous system challenges her to function.

It’s the first day of Kindergarten and my daughter has Sensory Processing Disorder. Sometimes for her it might feel like the world is going to crash in on her and it’s my job to see it happening and help her navigate through it. It’s like I’m her lighthouse. When the storm starts, I help her find the way home.

Back to School for Sensory Parents Day 2

Today is day two in our back to school series for sensory parents.  If you missed yesterday you can read it here.

As tough as back to school can be for us as parents sometimes, it’s even harder on our kids. The change in routine, the new schedule, the new teacher, everything is different. Which, for some of our kids can almost be like the perfect storm. In our house it usually results in after school meltdowns. During the school day she’s able to hold it all together and she stores it up just for us when she gets home. The days that an epic meltdown doesn’t happen after school are few and far between.

Back to school for sensory parents. Parenting a child with Sensory Processing Disorder.

We’ve learned a few things to help make it happen less often. But overall the game plan for afterschool goes something like, “Buckle up, let’s just get through it.” We also always say that, “It’s not a matter of if, it’s really just a matter of when.” Sometimes meltdowns happen right away when I get her in the car, sometimes it doesn’t happen until later in the evening. We still try to do everything we can to avoid or minimize a meltdown. All of these things throughout the day can affect her and it’s what we use to help her.

Go with what they will wear! CLOTHING: OH… clothing!! Who knew something so simple could be so challenging. Our goal with clothing is pretty simple. As long as she has CLOTHES on, we go with it! So, here’s what we do, I buy everything I KNOW she will wear and always make it so that I can return it. We test it out at home and if it doesn’t get worn in two weeks I know it can be returned! Here’s where we shop and a few of our favorite things over the past two years:

Shirts: Short sleeve t-shirts are a must!! I’ve had good luck with The Children’s Place, they usually have graphic T’s that she is excited about. Over the past year she has really preferred Nike dri-fit or Under Armour heat gear shirts (I usually find a few at the outlets) that are of the lighter weight fabric that breathes and helps her stay cool since she has challenges with temperature regulation.

Pants: This is another one of our biggest challenge. I usually buy about 10 pairs when I find something that works. We have had really good luck with C9 leggings from Target and C9 Dance pants. They have seams that are soft and not scratchy!!

Shoes or no shoes… SHOES: Don’t even get me started on shoes. They are like tiny torture devices in our house. I talked about this a little yesterday and what our plan for this year is. We have concluded that keeping it exciting buying new every 3-4 months will help. She’s also really tough on shoes anyways so she will need new ones. Also, I am not worried about her learning to tie her shoes, she hates shoes with laces so I’m in no hurry either, and these kind go up to very large sizes woo hoo!

Stride-rite has been our favorite place to find shoes.   Our nearest one has a manager whom I’ve deemed the shoe whisperer since our daughter could walk. These are the shoes that we recently have bought in multiple sizes!!

Send something comforting with. A gift from us to wear: Necklace, bracelets and watches oh my! She loves to have something from us to remind her of us during the day.

To help in moments of distress and waiting. Fidget/Chewelry: this is our favorite product. I mentioned this yesterday as well, these bracelets (for added sensory impact, key ring removed) and they are great for something to chew on and fidget with during lines, transitions and circle times.

To make lunch time easy. Lunchbox items that aren’t too big of a challenge: here’s our favorites. Any of the Sistema lunch box containers work really well for kids that struggle with fine more skills!  They are easy to open and kids (and parents) can feel confident that they can open them!  This was something I was really worried about last year. Luckily I learned that if they can’t get something opened, the kids help each other or they can raise their hand and a lunch attendant will come.

Minimize the meltdowns. Transitions: In our car, by Miss Sensory’s choice we listen to the SAME song to and from school (comfort/calming). We also have a variety of thinking games we play on the way to school (I spy is a favorite, along with doing math problems and rhyming). After school, we do a snack in the car. We’ve had this same routine for… years! It’s kept us all calm, which is our main goal during transitions! Worst case scenario, she gets my phone for the quick few minutes and will play a game (distraction). Focus on what your child needs at the moment, ours needed very strict routine, so much so I often park in the same area!

If your school doesn’t do an open house, see if you can go in early and find where your child’s classroom is and practice everything. We are able to go to an open house night, practice using the locker, seeing where the nearest restroom is etc.

We also practice getting ready for school the week before school. So we will get up at school time and get ready (like we are going to school) and leave the house and drive to school, then we do something else. This helps prepare her for the first day.

Keep Calm. Anxiety: I don’t know about you but Miss Sensory has a lot of anxiety and all the typical tips for helping prep for school don’t seem to work. Our best response is actually to not tell her when something is coming up. I know that sounds horrible but I’m completely serious! This has worked really well for everything from surgery, celebrations, and trips. So we will actually be doing that for the first day of school, wish us luck J!

Social Skills Practice. We also prep for a lot of situations for school. We talk about what she needs to do if she doesn’t feel good, if she needs to go to the bathroom, if she needs help. What to say when you meet someone new. These seem like really basic things but I know that when she’s in the moment and her brain shuts off she isn’t able to communicate what she needs.

Visual Calendar is a necessity! We are lucky that we do get one from the school weekly so that helps me not have to do one every week. It will list out what days she has music versus gym. Otherwise, I would probably make one. Some teachers will do this and some will not. For breaks, I always make a schedule as well.

After-school Routine: Follow your child’s lead after school. We often have an agenda of our own as parents. We are ready to tackle, snack, homework, bath, dinner etc. But our child may have a different plan. We will often make a visual schedule after school.   I will say that some things are non-negotiable like homework and bath time and let Miss Sensory choose when we will be doing them. This helps her feel in control and makes everything run smoothly. I think this is especially important after she’s just finished a day of having to be completely out of control, which is another challenge for her. Often afterschool she really right away wants a snack and needs some chill time.  I giver her some space to do that.

What tips do you have for other parents for back to school? 

In the next few days we will be talking more about tips to help your child, before and after school routine and homework tips. Stop back to read the entire series.
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