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.

If you liked this post you might also like:
  

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!


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.