Category Archives: Sensory Parenting

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!


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

Dear Hurting Mom during the Holidays…

I know your heart to have the most perfect Christmas, to have a magical holiday filled with laughter, joy and treats. I know that you are disappointed not just with Christmas but this life. This life wasn’t what you had planned and I know it’s hard to adjust to that.

I see you trying in the middle of your child’s meltdowns and rages to hold it together. To make their world better, to calm them down. I know the pain you feel when everything you do doesn’t seem to make anything better and you hold it all in. You hold your pain and your misery over this in.

Most around you point their finger and blame that this is your fault. They don’t see the differences your child has. They don’t see how you exhaust yourself trying solution after solution. They don’t see how you’ve exhausted all your faith and hope that something, anything is going to make this better. Better for you and better for your child.

I now that for Christmas what you want most this year is peace. Any amount of peace for your heart and your home. I know that you are desperate for this in the middle of living in the toughest thing you have ever gone through.

I know that it feels like it’s never going to end, I know that it feels like there is no one there to help. I know that you sometimes feel like giving up.

I also know that you don’t and won’t give up, because you can’t.

You are needed.

You give endlessly with little in return.

You take every blow emotionally and physically… quietly without a sound.

You move through life carefully hoping that it will prevent explosions only to have them explode when you least expect. Take a deep breath…you’ve got this.

Dear Mom, I know that you can let go.

I know that you can let go of all the Holiday expectations and completely adjust the holidays to fit your precious one.

I know that you can let go of all that anger you hold inside.

I know that you can let go of all the bitterness and hurt you hold in your heart.

I know that letting go of all these things can make room for you to melt into the moment.

The perfect moment of your child sleeping soundly, the joy on their face as they open their present.

The moment of them snuggling in and needing comfort.

Be fully in those moments and don’t let go. Let them fill your heart this holiday season. You need them.

You might also like:

Dear friends and family who don’t know my child has Sensory Processing Disorder…

7 Christmas Wishes from a Sensory Mom

For when your family doesn’t see your child’s special needs…

Dear Special Needs Mama who feels Heartbroken…

 

 

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

Recently, I asked parents what their toughest challenges of parenting a child with Sensory Processing Disorder was.  The response was overwhelming!  If you ever thought you were alone, this list should help you feel like you are not alone in the challenges with your child.

Aggression: Hitting, biting, throwing, destroying, yelling and being out of control.

Constant motion, never sitting still.

My daughter rips shirts that don’t feel good to her.

Separating typical bad behaviors from those driven by sensory issues. Because they need to be approached differently.

No sleep.

Other people not understanding

Dressing is the worse part for me I get anxiety knowing it’s time to get her dressed

Everything, especially the no support from friends, families, or even strangers.

The constant noises she makes.

Behavior, eating, no sleep, potty training and not knowing when it’s sensory or behavior.

Being an avoider parent to a seeker child or two…

The fact that nobody believes me that it exists and my son has it.

Constantly licking everything!

Finding a baby sitter.

Trying to explain it to others… feels like justifying behavior.

Right now it’s thinking you have everything under control and then it suddenly goes to pot.

Judgements and others especially family not understanding

Keeping your cool when you’ve had enough.

Probably the unpredictably. I never know how play dates will go or school or life really.

Being jealous when you see NT kids having a great time with their families.

Knowing that I will never fully understand my child’s thought process, frustrations and I’ll never be able to fix it for him.

You always have to be on your game… planning for the next moment… and being human. All at once.

Meltdowns.

Family who dismiss it as poor parenting

Judgement from others, haircuts, teeth brushing, trying to make family understand.

Knowing no one can fully understand.

Not knowing when the next meltdown will be.

Patience.

Finding nutritional foods he will eat and clothes and shoes he tolerates.

Keeping my cool.

Watching my kid missing out on things because of his SPD.

Knowing the difference between a scraped knee and a broken leg. The screaming is the same.

People not showing support.

Isolation.

We haven’t been to church in years. Some friends and family don’t understand, sometimes it’s so exhausting for me and my husband.

Dealing with non-sensory parents.

Fearing the wrath of my child.

Public outings.

Seeing him get punished for his symptoms at school.

People saying he looks normal.

Having to be on 24 hours a day. Always alert always watching there is no down time.

The extra strain of trying to figure out how to handle him puts on my marriage paired with the isolation of having no support system and having no one willing to watch him so we can have time alone together.

The judgement and prejudice of people who have no clue.

Not being able to make it better… you can only avoid so many things

When they shut down anywhere and everywhere…

Family and friends always suggesting what they think will quick fix the issues and literally believing they are correct.

People thinking your child is spoiled and bad mannered.

That my child suffers and that his self-concept is being damaged because people do not understand him.

People thinking you are just a bad parent.

Giving up having control or even a real scheduled day for that matter

That they compare their child that has ADHD to my child and give parenting pointers.

Constantly feeling like you need to defend yourself and your child to everyone.

Constantly monitoring every situation your child is in and eliminating any threats.

Catering to food aversion, oral hypersensitivity and generally trying to be sure no peas are smooshed, no foods are touching another food, and it’s the right bowl, plate, silver wear and there’s no brown dots on that banana.

Every dang thing being a fight.

Him not speaking.

Can’t express herself and tell me what she wants and needs.

Hearing non sensory friends tell me it’s all in his head and there was no such thing around when they were kids.

No one else understands they think it’s about discipline.

Shopping for things for her. Don’t want to buy wrong clothes or a toy that will set her off.

Having siblings and not being able to do much or involving all.

Having to explain to professionals that she has sensory issues.

The stares.

Running away from me.

Explaining to other parents.

Having 2 with sensory needs that are the complete opposite of each other.

My spouse in denial about the whole thing that leaves me with absolutely no help.

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

Remembering that you need to take care of you as well. I put all my time into work and my son and I never remember to make sure that I’m mentally okay.

Sibling relationships.

Handing disappointment.

Always being overwhelmed.

People asking why we chose to have more children after him.

The effect on siblings.

The fact that I have it myself and don’t want to be touched and she craves touch.

Not knowing what we are going to face when he comes out of school.

Always being on my toes.

Not knowing how to calm them.

When you can’t figure out how to help them feel better.

To know what input he needs.

Being stuck in constant flight or fight.

Unpredictability.

Constantly thinking you aren’t doing the whole parenting thing right.

Not knowing what our future will be like.

Having to push through everything because you want to just give up…but you can’t because their life depends on you.

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Dear Friends and Family who don’t know my child has Sensory Processing Disorder…

Some days are magical… Parenting a child with Sensory Processing Disorder

Dear Special Needs Mama who feels heartbroken.