Category Archives: Beyond Sensory

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?

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.

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

My 2017 Goals as a Special Needs Mom

I’ve already determined that 2017 is my year.  This is my year.

I think it’s pretty common for moms to lose themselves, at some point.  We take on this whole role as part of our identity and sometimes we let go of other parts of our life to make room for that.  As a special needs mom I felt like this happened at an intense level.  There was a point in the past 6 years where I didn’t even care that I laughed at the thought of trying to floss because I couldn’t get anything done and I wasn’t taking care of myself at all.

We have this shelf in our basement that we call our dead dreams shelf.  It’s loaded full of our music equipment and also our baby equipment.  You see, somewhere along the way we let go of playing music because life got more challenging.   We stored away all the baby equipment as we didn’t add more babies to our family.  And, there it all sits.  Maybe for you it’s different things that you’ve stored away, but my guess is that you have a few dreams that are dead too.

So this year, I’m getting back into focusing on me.  JUST ME.  This is my year.  Because I want to get to those dreams and I want to fully live out who I am created to be.  Last year, right at Christmas time of 2015 I hit rock bottom, as we ended one of the most expensive therapy treatments we’ve tried for Miss S I literally fell apart under the weight of it not being effective.  I lost a lot of me.  Life became more about coping to make it, instead of enjoying every moment.  This year, I feel a little bit more energized to focus on me and what I want and need.  It’s something that doesn’t come easy for me at all but as a special needs mom, I’ve learned it’s the best thing I can do for our family.

It’s time I start dreaming again.  Although, I have a few big dreams in the back of my mind all of these little details this year will definitely help get me there!  This year is all about decreasing my stress level, focus on improving myself and learning to love where I am at.  This is my year!

House Goals:
Keeping the counters completely cleared.
Keep the floors picked up.
Make my bed.

These are the areas that I could easily see that I realized were stressing me out.  I realized that I can easily focus on these areas and it helps reduce my stress level.  Sometimes, I am really surprised how much my environment can stress me it.  Sensory Dad, on other hand is never bothered by how messy it is.

Financial Goals:
Live on a budget.
Get rid of debt.
Increase our income.

Over the past few years we’ve been very fortunate to not have to live on a budget.  I realized however that we aren’t being very intentional with our money and we have bigger goals that we’d like to meet.  I’d like to get back to living within a budget, take care of a little bit of debt and increase our income.

Health Goals:
Less sugar, more fruits and veggies.
More water.
More sleep.  (Go to sleep earlier).
My fitness: cardio, weight lifting and yoga.

A lot of these goals we are doing as a family.  This month we are having a monthly water challenge and tracking how much water we are drinking as a family.  Next month, we are going to focus on cutting out sugar.  I like to keep things simple and tackle one thing at a time!

Personal Goals:
Get dressed and make up on to take Miss S to school.  I learned that I feel more awake and definitely a little more put together than when I crawl out of bed throw on a sweatshirt, boots and a hat (and generally feel and look like a train wreck).

More reading. I’ve got a giant book list to tackle this year.

Create more: paint, draw, scrapbook.  I’m starting a once a month get together with a couple of girls to do craft nights!

Music: focus on learning one new song a month.  I often don’t make time for this but I enjoy doing it.

Spiritual goals:  One course or book a quarter.  Since, we don’t go to church, Sensory Dad and I, are starting an online course this quarter through Bethel Church in Redding, CA.  We also started reading If God is Good by Randy Alcorn together.