Category Archives: Sensory Parenting

5 Things You can do to Feel Supported as a Special Needs Parent

I had coffee with another mama a couple weeks ago, her daughter is just a little over 2.  She packed lunch for her and we blocked her into a little area where we were sitting.  For almost two hours we sat and chatted and for the most part this little one ate and played.  Close to the end of our time together, she had broken loose and started exploring the coffee shop.  Each time, her mama would catch up to her, scoop her up and she would giggle in pure joy.

This is a drastically different picture than what we have had raising our daughter.  At that age our daughter would never sit still.  She would be so fixated on what she wanted and there was no holding her back.  Removing her from the direction in which she was going would result in hitting, head banging, biting and screaming at that age.  Our parenting has been nothing short of extreme.

It’s been an uphill battle.

It’s been a process and I only made it through the worst years because of my mom.

We’ve lived in crisis for years and part of our success has been in having support.  It hasn’t been easy to find support, it hasn’t been easy to maintain support.  We often feel like we are lacking in support.  I think a big part of that is feeling like we shouldn’t need it.

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First, ask yourself these questions to better understand why you feel unsupported.

Overall, asking myself these three questions helps me redefine the support that I need and then focus on what I can do.  The first question is, “What’s preventing me from feeling supported?”  Often, this starts with me and my needs.   Do you build walls around your family, because of living in survival mode?  Sometimes, in the middle of trying to be so strong for ourselves we forget to ask for help, we want to conquer this on our own, or feel like getting help isn’t worth it.

After I look at what the why is in preventing me from feeling supported, then I can move onto the next two questions, “How can I better support myself?” and “How can I get better support from others?”  Often, the first things I do for myself is to cut down my expectations and revisit better coping skills.  After that I think about who has offered to help and how I could add that into our lifestyle.  I also try to remember that the next person that offers to help I am going to take advantage of that and say “Yes!” right away instead of saying, “If I think of something I will let you know!”

When we are struggling with feeling supported there are a five things we can do:

Start a support group.

Find other mom’s like you that need support.  One of the benefits of starting a group is that it can also help fill your bucket, sometimes giving to others is the best medicine.  You are not only helping yourself but you are helping others too.

Or if this is a little out of your comfort zone join in a new support group.  You might be surprised by how refreshing it is to find others, even if their stories are different who are experiencing similar changes in their family.

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Think about your coping skills

Sometimes thinking about what is going on in your family, pinpointing what is stressing you out and how you can better deal with it personally can help you come up with healthy ideas to cope with the stress in your life.

Sometimes coping and self-care doesn’t feel like it is worth it.  I often neglect myself, only to pay the price later.  Taking a look at what I’ve forgotten to do and reminding myself that it needs to be a priority helps me remember it is vital to surviving under a lot of stress.

Think about why you don’t feel supported.

Maybe life has gotten really hard and you’ve decided it’s easier to stay home than leave.  I know that feeling and we’ve been there!  Maybe instead of going to the next big family event you could invite one family group to meet at a nearby park.

Sometimes, we’ve put up the walls.  We’ve pulled away from family and friends only to focus on the crisis in our homes.  I am at fault for this one, and I often need reminders to reach out to others.  I get so busy trying to manage our home and keep what little peace we can I forget about everything else.

Make peace with other’s not understanding you.

I crave someone who gets what we are going through.  No one except for you, is going to completely understand your situation.  As hard as they might try, sometimes we can not understand what it’s like to walk in someone else’s shoes.  Make peace with this reality and forgive others for their lack of empathy.

The easy way is to get angry and bitter, fight for being at peace with other’s not understanding your everyday life.  As hard as this is, if you have a friend that doesn’t get what crisis in your home is like but will have a play date with you and not judge your parenting, enjoy that friendship. Sometimes we can sabotage relationships because we just want someone to understand what we are going through.

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Simplify.

Sometimes when life gets overwhelming it’s better to let go and keep things simple.  It’s easy to get overwhelmed with the everyday battles, the repeated struggles and the inability to function.  Sometimes, less is more.  Sometimes, letting go of what’s necessary is the biggest key to survival.  Taking away my own personal pressure we put on ourselves is sometimes the best way we can support ourselves!

It’s really all about balance, managing the daily crisis in our home with some level of support.  It’s often a very fine balance, which I still struggle to maintain.  Hoping this reminds you to weigh the stress in your family life with support from yourself and from others.

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Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs 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!


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.

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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!