Category Archives: Sensory Parenting

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!


Consumed by My Child’s Special Needs

There’s this sense of desperation that I live with every day. It’s a constant overwhelming heaviness of doing more for our daughter. I start to think about the years ahead and panic starts filling me, what if. I have this urgency to do all the therapy now.

One of our new therapists that works with our daughter recently told me the next two years are going to be key for us. I about wanted to curl up on her floor in the fetal position with a paper bag.

You guys, this special needs thing consumes me. It consumes all of my energy, all of my time, all of my thoughts. It is my obsession. The next therapy, the next thing to try. The next hope that this will make a difference for her, for us.

I recently had to make a list of my hobbies, what I enjoy doing in my spare time. You know what I do in my spare time, I research my daughter’s diagnosis. I read book after book and blog post after blog post. That is my spare time.

My life is consumed by her diagnosis.

And this my friends is a problem. This left me with no room for anything else. No room to breathe. I let go of taking care of myself.

But it doesn’t have to keep going this way.

It takes self determination to let go and move away from special needs consuming our life. It takes space to live with special needs just as they are present in this moment, not expecting change and not praying them away.

It takes discipline for me not to do my absolute best to fix this, to try to fix her. It takes a daily reminder for me to step back, let go and breathe. It’s not something to be fixed, it’s something to live with daily. To love her more, meltdowns and all.

As I am writing this, this song came on my music feed.


“Come and rest here
Come and lay your burdens down
Come and rest here
There is refuge for you now”

Oh, how I needed these words. It’s the direction I need to go in. The letting go and the leaning in to what I need. Giving ourselves the time for rest, the time to recharge and to fill our life are the best things we can do for our lives as special needs parents.

Last week, I was scheduled to volunteer in Miss S’s classroom. Last week, was also so epically (is that a word?) bad that I just couldn’t even do it. It was the out of control, minute my minute, kind of days. For the first time in our life with her, I put myself first. I notified her teacher that I wouldn’t be in to help that day and I stayed home and filled myself up for the day so that I could be ready for Miss S when she got home.

You know what, it was the best decision I’ve ever made.

That is my challenge for you this week. How can you put yourself first this week? Even if it is just a small few minutes of the day, schedule it this week!!

Special Needs Parenting: When you wish you were just a mom.

It wasn’t too long ago that I was venting to my Mom about some of our challenges with our daughter. What she said next was something that shocked me. She said, “Well, you signed up for this, you wanted this.”

You know those moments in life where you wish you had a better come back, this is one of those times that I actually knew exactly what to say. Although, this hurt me deeply that she said that. I responded with, “No, Mom this is not what I wanted. I wanted to be a just a mom.”

I never signed up for multiple therapy appointments in a week or even in a day.

I never signed up for sleep deprivation that lasts 6 plus years.

I never wanted to spend more time doing in home Occupational Therapy, Psychology Homework, Vision Therapy, Physical Therapy or Speech and Language therapy than just being with my daughter.

I never signed up for the constant research of therapists and techniques.

I never wanted to have endless therapists not know quite what to do with our daughter.

I never signed up to have to fight to get help for her or for us.

I just wanted to be, just a mom.

I wanted to soak in her laughter. Comfort her hurts. Be there for every big and little moment. And not be clouded by the weight of multiple disorders.

Another conversation I had with my husband when something like this:

Me complaining (the short version): “I’m tired of appointments. This is so hard. I’m tired of being hit. I’m tired of trying every therapy method under the sun. I don’t know what to do. I want to be just a mom.

Husband (the short version): You are never going to be just a mom, you don’t have just a kid.”

“You are always going to be a special mom, you are never going to be just a mom.”

I won’t ever be just a mom.

I have a 25×30 occupational therapy room in my house, swings galore and a ball pit.

I’ve learned how to be an Occupational Therapist.

Physical Therapist. Speech and Language Pathologist. Vision Therapist. Psychologist.

And expert in my daughter and only my daughter.

I can see when she’s spiraling out of control.

I know how to help her best even when I doubt my ability.

Although, I won’t ever be just a mom. I am the mom my child needs me to be.

There’s more worth in the rare moments of good and celebrations of success while carrying the heaviness of being a special mom than I will ever know.

It takes a strong mom to balance the needs, the appointments and the emotional weight to fight through all the challenges and find small amounts of joy in this journey. You are just the mom your child needs you to be, too.

If you liked this post you might also like:
  

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!


5 Ways to Fight Loneliness as a Special Needs Parent

Parenting a special needs child can be really lonely and sometimes we bring it on ourselves. Last year, we were barely hanging on and we found ourselves just trying to get through. We didn’t have people over because the last time we did it didn’t go well. We didn’t go to events because they just don’t work very well with our sensitive child. We really didn’t do a lot of things, we hibernated our little family at home. This summer we didn’t even go to the beach, we bought an above ground pool and we stayed in our backyard.

A big part of doing those activities or not doing some activities is that it feels safer for us. We don’t want to take our public tantrum throwing child out in the world. We fear the next explosion or what our friends will think if she hits one of their kids.

Last year, we felt safer to just stay at home.

But, what we didn’t realize is that we need communion with other people. We need friends and people in our life, to laugh, to forget about our crisis that we have at home every day. So this year, we are making it a priority and so far it has been so worth it.

Since, I lost touch with a few friends last year a big part of me blamed it on them. Maybe it was their busy life or maybe they just didn’t want to be friends anymore. I somehow thought that might be true. But, the funny thing is that when I reached out they were craving this friend thing too.

I can tell you from experience that you probably have a million what ifs, or possible reasons why you may not have friends by your side right now. I’m going to be honest here and it might sting a little, the truth is that you need them.
I know it can be a hassle trying to schedule things, I know that your child might explode and you might feel judged. I also know that getting to do something with someone else can bring so much joy into our challenging life as parents.

5 ways to fight loneliness as special needs parent:

Push out all the negative thoughts and replace them with the possibilities. Sometimes we get stuck focusing on all the reasons why don’t have people in our life. We get crushed by our fears. We lose sight of the possibilities. Every time a negative thought of why you don’t have people in your life starts to push its way into your head, push back with the possibility or idea of doing something with a friend.

Put yourself out there. Someone has to be the one who initiates.  Do you have an idea of something that you’ve always wanted to do with someone? Did you think about having people over for some kind of event? Do those things. Ask someone to join you and your family for an activity.

Get real with your friends and pre-warn them of what your life is like and your child. This is something that you need to be picky about who you share it with because your delicate life situation is not going to be understood by everyone. Find those who you can share your life and your child with and pre-warn them what might happen if you do something together.

Find understanding and non-judgmental friends. The friends I had pre-parenting versus the friends that I have now are actually completely different and new! If you don’t have any friends in your life where you can be completely real (see above) with them, then it’s maybe time to consider finding someone who can empathize with your life. Often, this is another special needs parent!

What’s the worst thing that could happen? If you happen to have bad public and social experiences with your child think about what is the worst thing that could happen. If you realize that maybe it’s not that bad, you can pre-warn your friend that this situation may happen with your child and they are understanding, you just might build your confidence to being more social again.

I really never thought we’d have to re-learn how to socialize. It’s a challenge that has become definitely worth it. We go in planning for the worst, hope for the best and don’t sweat the meltdowns.

You might also enjoy:

How to be Friends with a Special Needs Mom.

Dear Friends and Family Who Don’t Know my Child has Sensory Processing Disorder.

Dealing with Anger & Aggression

80+ Toughest Challenges of Parenting a Child with Sensory Processing Disorder