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.

OTHER POSTS YOU MIGHT ENJOY:

  

  

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!


 

Retail Therapy: Wednesday Edition

(Note: The links in this post are affiliate links, and we will be compensated when you make a purchase by clicking through our links. Thank you for supporting our blog.)

I’ve found some great things on Jane.com this week.  I’m starting to stock up on supper items to keep on hand.  It’s nice to have a bin full of small crafts and activities that take zero planning!

Bracelet Making Kits

These super cute bracelet kits are perfect for Miss S.  with an added fine motor benefit!

There are 4 different options and you can make 2-3 bracelets from each set for $7.49 plus shipping. 

Personalized Coloring Pillow Case

We love out of the box coloring activities, so I knew this personalized pillow case that you can color on, will be an easy win for a project this summer!

This would be an awesome party project or gift item.  There are 34 different styles you can choose from today on Jane for $8.49 each plus shipping.

Empowering Women Tees

I knew I had to have shirt, raising strong girls.  I have always loved the quote:  “Here’s to strong women, may we know them, may we be them, may we raise them.  

Multiple designs available with 15 different shirt color options available on Jane today for $13.99 plus shipping.

Nightlight Color Changing Glow Balls

The gradual change of 7 colors of soft glowing light will soothe them right to sleep. It also has a flat bottom to put on a dresser so it won’t roll off!  They are available on Jane today for $4.99 plus shipping.

Cheeky Door Mats

I just laughed when I saw all these door mats… I need them all!

Several unique and funny sayings for $21.99 plus shipping!

Happy Shopping!

The shirt that describes my life and more of my favorites on Jane.com

(Note: The links in this post are affiliate links, and we will be compensated when you make a purchase by clicking through our links. Thank you for supporting our blog)

Let me just start by saying that sleep deprivation for almost 8 years causes adverse shopping effects.  I may be prone to impulse buying on Jane.com and it is by far where most of my wardrobe and gifts are purchased.  Thankfully, they came out with a shirt just for me…

Jane has these Rose Gold Casual tees for 13.99 + shipping right now!

There are four fun ddesigns and three colors to choose from.

Shipping is $3.99 for the first tee and $1.00 for each additional tee shipped within the same order.

Daily Boutique Deals

If you aren’t familiar with Jane.com they are a daily deal website with boutique ladies clothing, kids goods, jewelry and even mens clothing occasionally.  The idea is they are always at an amazing discount for a limited time so if you see something you love, get it before it’s gone!

And a few more of my favorites today:

I bought this dress last year and lived in it!  For $14.00 +plus shipping you can’t go wrong!

Because I’m really a tshirt and jeans kinda girl this tank has been my go to!  Through it on and go!  Jane has it for $12.99 +shipping!  

Last but not least… Jane has this Chaos Coordinator Tee for $13.99 +shipping!

Happy Retail Therapy!!

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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.