Author Archives: sensorymom@outlook.com

When the storm gets bigger…

In case you’ve wondered where I’ve been over the past two months, I’m back today to tell you. I’m still here… barely.

You know that one person in your life who has an amazing connection with your unique child, may not have all the answers but listens to you when you are at the end of knowing what to do and feel like you can’t go on.

That person has been my Mom.

At the beginning of February my mom was diagnosed with cancer. Losing my Mom has been one of my biggest fears in my life. She has been the one who has helped me through our parenting journey and I don’t know how I would have made it through all these years of aggression without her.

That day in February forever changed my life. What proceeded was something my family could never have imagined. We ran to doctors everywhere, meanwhile we struggled to take care of my now immobile Mom. My mom went from an active busy life to having almost 4 of us home with her at all times trying to take care of her care needs.

She was the picture of health, she exercised and she ate the best food (home grown, including the chicken).

The day we had to hospitalize my mom, one of her biggest concerns, was what I would tell Miss S.  She cried as she said she was hoping to be her Grandma for a really long time

In just a few short weeks, we were sitting in a hospital for days, as we waited for her final breathe.

It’s something that still feels like a bad dream.

I can’t believe it is real.

I whispered to my Mom that we would be OK. That her granddaughter (Miss S) would be OK.

Right now we are still trying to find the ground beneath us. It has changed me in ways I never expected and has turned my life upside down. I hope to find words to write again.

I always worried how I would handle something bigger in our already crisis life. The past two months has shown me how much more I can handle, how much parenting a child with special needs has equipped me to handle life’s toughest storms. The years of communicating with doctors, medical professionals and insurance prepared me for the past two months.

So, to you weary mom who is in the middle of parenting and feels like you can’t go on. You never know what your journey is teaching you and how it is equipping you. When you are in the middle of it, it seems so dark and isolating.

Being thrown into a bigger storm has showed me that all my years of feeling like I was barely making it through was really strengthening me.

Hold on tight, it’s a wild ride and believe me you get stronger everyday!

We got a puppy! To help our daughter with special needs.

So we’ve got some big news this month. We’ve been looking for a year and we were lucky enough this month to finally add a puppy to our family! We weren’t exactly planning on a puppy we actually had said yes to a 3 year old rescue but the rescue bit one of the foster family’s children so she wasn’t able to be placed in our home.

We had really been thinking about this and Sensory Dad especially wanted this. We set our sights on a Boston Terrier, I didn’t want anything too big. Sensory Dad wanted a dog that would play. Boston Terriers are known to be really great family dogs and our vet said in all her years she’s never heard of one biting! YAY! Boston Terriers also have short fur which means no grooming, which our last dog had to be groomed so we were excited about that. Miss S loves the way her fur feels and loves to pet her. She loves to carry her around Stella has done really well with Miss S’s sometimes not so gentle ways (we are working on “Gentle Hands!”).

So we crossed our fingers, drove 600+ miles and surprised Miss S by telling her that we were adopting a puppy. She was surprised, we met a lady in a parking lot holding our 2 pound new bundle of joy.

Meet Stella.

It’s been a little over two weeks and I’m not going to lie it has been very overwhelming but we are hoping that the puppy training phase goes by quickly and the benefits far outweigh the additional stress!

Although we are still in the honeymoon phase we have already seen the benefits with Miss S. Stella so far, helps her focus on something, gives her company and listens to her read. I wasn’t really prepared for the training we need to do with Miss S. We are working on teaching her how to “be a tree” when Stella starts trying to get her feet. Last night we decided that right now we will need to always be present when Miss S is playing with her so we can work on training Stella bite inhibition.

It’s a lot. Surprisingly I feel like special needs parenting has prepared me so much for puppy parenting. Puppy schedule…no problem. Behavior management…easy peasy.

Right now, it’s less sleep than the little that we were getting already, lots of accidents and never ending snuggles.

But the other morning I was talking to Miss S on the way to school about her aggression and she told me that at home right now she doesn’t want to scare Stella. So we’ve seen her keep her cool. I’m not sure if this is good or bad, but we will take it.

When Miss S is upset Stella has been a great to have Stella as a snuggle buddy and she loves to lick tears away. Licking was one of things I didn’t know how Miss S would handle and she loves it. It puts a smile on her face and she starts to giggle.

Do you have pets in your home that help your special needs child?

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

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When you want your life to make more of a difference.

Stepping out to write on faith this year more, is going to challenge me. I’m not sure if I’m even ready to do it but here we go…

I’ve had this thought running through my head lately. My husband and I have always felt called to greater things. We have always wanted to do big things and have done quite a few of them. But, we’ve always had visions of more. A friend of ours actually travels the globe and reaches large groups of people to tell them about Jesus. It’s amazing to see. I am so thankful that I have not been called to do that because I don’t travel well.

We’ve always dreamed of leading worship for large groups of people or speaking for large conferences and that hasn’t happened. It’s easy to wonder why and compare to where other people are at. Even with my blog sometimes, I wonder about why aren’t my numbers more.

I chase more in so many areas of life.

I crave that my life would make more of a difference.

Do you crave that too but are frustrated with where you are…

We built our house with 6 bedrooms, I wanted to fill it with babies.

We have our one daughter and possibly only.

And the thought that’s been running through my head lately is that:

Maybe we are called just for this one, maybe we aren’t called for the multitudes.

When I shared this all with my husband he of course thought about how Jesus taught in Luke 15:1-7 about the Shepard who went out of his way for the one lost sheep. When the Shepard finds his one sheep it says he “joyfully” picks it up. If it were me, I’d probably be angry that I had to find this one sheep.  The parable is actually speaking about that there will be more rejoicing in heaven over one sinner who repents than over ninety-nine righteous persons who do not need to repent.   But, it reminds me of the season of life that I am in.

Maybe it’s only about my one.

Maybe we are all exactly where we are supposed to be in life, doing exactly what we are supposed to be doing.

It might not be touching millions of lives or having a huge impact. It might be just for the one or the few in our circle of influence.

I may not lead the multitudes in worship or speak at a conference, but I am hoping that I can joyfully do well with the one I’ve been entrusted with.

It is definitely the biggest challenge I’ve had in my life.

You know that I always tell it like it is here on my blog and a big part of my life is parenting a special needs child.  That reality is quite different from the life that I thought I would have as a parent.  My circle of influence has continued to get smaller and smaller and with our little family it’s easy to feel like what I do doesn’t make much of a difference.  I continually need to remind myself that I am making more of a difference than I will ever know, even when it doesn’t feel like it. And, when it’s different than I ever expected.  It might be just for this one.