Just because your child is having a tough day doesn't mean you have to!

Just because your child is having a tough day, doesn’t mean you have to!

I have never been a person who is affected by how someone else is doing…as much as I have been by being a mother. It deeply affects me on the days that Miss Sensory is having a tough time, I have an even tougher time. It’s even harder when some days are really magical and other days are completely impossible. I feel like a yo-yo never knowing which way I’m going, if I’m going to be pulled down or up.

I remember the toddler years when it was so difficult to get her ready to leave the house I just didn’t even leave. When I did need to leave, I remember repeating to myself “I am the parent, I can do this.” At this point we didn’t know we were up against special needs. I had no idea it could be so difficult to do simple tasks like getting dressed, changing a diaper, getting shoes on. She would scream and fight and I didn’t know why at the time (now I know it was her tactile system on extreme sensitivity). But, I remember being a Mom who was in charge, I’ve got this, I can do this. I felt strong, despite the challenge of trying to dress a little tornado. Somewhere along the way I’ve lost that.

Just because your child is having a tough day doesn't mean you have to!

So, yesterday was the completely impossible kind of day. And what happens to me is that I check out. I check out mentally and emotionally. It is the worst feeling. I end up wondering what is wrong with me without really realizing what’s going on. It’s this downward spiral. But today, today Miss Sensory woke up and was completely different and so was I.

And then I realized that I can do something about this. I don’t have to allow her bad days to bring me down. I am tougher than that, I have never let someone else’s bad attitude tear me down before so why is it different when it’s my child?

Maybe it’s because I feel so responsible for how she’s doing and how she’s feeling. But I can’t control that.

I can’t control that her body doesn’t respond normally to the environment around her and that she gets really angry about that.

I can’t control that emotionally her ability to regulate is non-existent and she goes from 0-100 in seconds.

I can’t control that she was born neurologically different and that life is tough for her.

I am not responsible for her un-happiness (Lord, knows I have done everything to change it!).

Our kids are going to have tough days, really tough days. They are going to be angry, mean, and unfortunately unhappy. But, I believe that I can be better and not be pulled down with them. So how can we overcome as parents?

Here’s a few things that I’ve found that helps build myself up on those bad days:

Step One: Recognize that your child is having a bad day and that doesn’t mean that you have to too. You are not a bad parent because your child is having a bad day. Stay strong and don’t get dragged down. Mentally separate yourself from their emotions and anger before it starts pulling you in. Try not to take it personally. It is not because of you that this is happening. You didn’t bring on the bad day.

Step Two: Create a mantra for those days. Something like, “She’s having a bad day but I’m ok. I am strong and I’m a good Mom. Just because she’s having a bad day doesn’t mean that I have to too.” It’s that positive self-talk, what do you wish someone else would say to you? Write it down and remind yourself often.

Step Three: Check yourself. How are you doing? Did you get enough rest? Are you hungry? Check to make sure that all of your needs are being met. Sometimes when our needs aren’t being met we start to get a little cranky ourselves. So in order to be your best, take care of yourself first!

Step Four: Is there anything else in your life that is causing you to get pulled in to your child’s bad day? Maybe you had a bad day at work? Maybe it was a fight with your spouse? Maybe you are PMSing? All of those things can contribute to your mental strength and ability to stay strong in the midst of the battle. Give yourself a little grace that if something is bothering you too, your child may be picking up on that. Breathe, relax, and let go for the moment.

Step Five: Don’t be afraid to admit if you need help. Parenting a challenging child is tough, beyond tough. In all honesty, it is the toughest thing I have ever done. It’s been so much easier to get her help, than it has been to get us help as parents. This year one of our goals was to focus on us. After everything we have gone through, it was in our best interest to individually and as a couple speak with a psychologist. I still have a hard time admitting this, I want to feel like I’ve got this as a mom. But the reality is that we have a child that is more challenging and with that we need a village equipped to help us.  Just talking with Mom friends isn’t enough, they don’t have the same challenges that we do. Talking with professionals who are familiar with the challenges of a special needs child, really helps me focus on what I need to do as a Mom.

Step Six: Focus on the things you are doing. Is your child loved, fed, dressed, warm, safe? These are the basic needs your child has and my guess is, like me you are doing an amazing job with those!! I would have to say, I am pretty awesome at those!!  Woo-hoo I’m doing something right!  Sometimes, we need to remind ourselves of the simple things we need to take care of in life. Reconnect with those. Having trouble feeling the love?— what does your child love to do? Read books? Grab a book and ask your child if they want to read it with you (just be prepared for them screaming no, and that’s ok if they don’t want to right now, my guess is that sometimes you don’t feel like doing your favorite thing all the time either)?

REPEAT, REPEAT, REPEAT.

This isn’t an overnight fix. But, given some time and practice you will build your mental strength and resilience when faced with the difficult days. Not every day you will feel like you’ve got it, in fact most days you probably won’t. Overtime, when you look back, it’s amazing how far you’ve come. Keep going.

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Battle weary?  If you liked this you may like these too!

The Secret Rule to Mommy Success!       5 tips to fight a meltdown hangover. 31 days of Loving Sensory Parenting.       14 Days of Inspiration for Special Needs Parents mini-eBook.

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When OT isn't working.  Sensory Mom Secrets.

When OT isn’t working.

Dear Occupational Therapy,

I am done with you.

It just isn’t working. And I am learning that when things aren’t working it’s time to be done.

But, it’s so hard!! It’s the only thing that is supposed to help with Sensory Processing Disorder.

And for over 3 years we have pushed through OT with all the hope and faith I had, that this would do something.

It wasn’t a complete waste of time and money. It did do some things (I think?) but for us it just wasn’t as magical as it appears to be for other families, who have kids with SPD.

I recently did an impromptu survey in one of the SPD parent support groups. There were 33 comments, I asked parents how long their child had been in OT and if they could rate it on a scale of 1-10 (1 being NOT very effective and 10 being very effective) where would they rate it. Most of those comments were rated on a 10 of effectiveness and a lot of those families rated it even higher than a 10!! And most of those families had been in OT for less than a year.

It’s obviously not you… but it’s us. You see for me, it’s hard to view OT as being effective. We’ve certainly gave it more than our fair share of trying. Including traveling across the country for the best.

But our experience is just a little bit more complicated than the average case.

We worked harder than the average case.

We did absolutely everything and beyond what the OT told us to do.

We researched the daylights out of everything.

We attended an OT conference with our entire team.

And still our girl would most of the time come out worse than when she went in. It was a disaster. There wasn’t any sitting still better, better focus, better attention, better behavior, less aggression or anything. And the season where we increased OT guess what also increased?!?!? All the mentioned above… it only got worse.

We saw mild improvements that we wonder if it was more developmental than OT improving it. She doesn’t run around in a circle constantly without stopping, as much. She will wear pants most cold days.

But when we weren’t hitting the mark with the OT near us (near by the way was an hour away) we traveled to the best.

We did everything they suggested. And we are still faced with the same reality.

She still puts everything in her mouth. She still wanted her shoes insanely tight. She still has a lot of sensitivity and she still never sits still. She still jumps off the furniture.

So here we are. Having spent thousands upon thousands of dollars and we haven’t hit the mark yet.

So, OT I’m done with you. I wish I would have seen this earlier. But, I didn’t want to have any regrets.

I’m done putting all my time, energy and hope into you working because clearly it’s not working for us.  It’s just time to be done.

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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!

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Dealing with Anger & Aggression

This is not a side of Sensory Processing Disorder that I like to talk about. In fact, it’s one I’ve barely mentioned here on the blog. But, I would like to shed some light on it, for the few of us that have a child that is aggressive. And, just an FYI it is a smaller percentage of kids with SPD that are aggressive. Not all kids with SPD are aggressive. Whether that is towards objects, kids, parents or even themselves. This needs to get talked about as parents.

I’ve lived far too long hiding this fact and being ashamed of it. I’ve vaguely tried to share it with other people only to hear “I would never let that happen in my house.”

Having a child that is aggressive is the scariest part of this disorder. It’s what pushed us to get help at such a young age for our daughter. It has isolated us. It has made us feel like we are the only ones in the world fighting to keep our daughter and us safe.

My goal here today is to share our experiences with you and remind you that you are not alone.

Our first encounter started around 9 months, as our daughter started head banging. She would literally seek out hard surfaces and as she was crawling on her hands and knees she would hit her head into them. I quickly learned to see her going to do this and I would swoop her up and she would hit her head against my shoulder. At night, she would hit her head around the top of her crib repeatedly. This wasn’t just a bump, this was a full force head into object as hard as she could, movement. Nothing broke my heart more than seeing my BABY doing this. Every doctor we spoke with said this was NORMAL. What I now know was that it was sensory seeking. She was seeking that input trying to feel something. She did this until she was 2 ½ years old. It was hard to see it as sensory seeking because it would often happen when we were redirecting her or when we said no. I now know that as her way of coping and trying to comfort herself as she didn’t get what she wanted.

After the head banging, she moved more into being destructive towards objects. She would seek out things to literally destroy. She would throw things, knock anything and everything down. She broke her door off the hinges at 3 years old. This phase probably lasted the shortest. Again, it often was in response to sensory stimuli for example turning on or off a light was almost like we flipped a switch in her to seek something to destroy. She was trying to cope with what was causing her pain (the light).

And then she turned towards us. She would hit, kick and bite.

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Here’s what I want you to know about all these scenarios. During all of these phases of aggression, there was no way of getting in, now way of getting through to her. She was shut “off.” There was no way to calm her down. There was no way to hold her. We fought to keep her and us and everything else safe. Her brain would literally shut down and there was nothing we could do. This wasn’t a child just being naughty. This was a child whose brain was functioning abnormally and she was literally fighting her way through life.

These episodes weren’t just short minutes. These were hours and days and weeks and years. It was from the time she would wake up until the time she went to sleep. It was constant.

As parents who have done so much to try to help our daughter we were exhausted that it was such a struggle to get help. Daily life was such a challenge. We went from one exhausting day to the next in a fog of survival and crisis. We lost hope again and again. And we got up every morning to face the same battle again. We may not have always been standing strong it was more like crawling on our knees begging God to get us through.

There’s no easy answer for how or what made it better. We still have some aggression but it isn’t the out of control aggression that we used to see. I am convinced that development is a major part of the decrease in aggression. As she got older it changed into being more manageable. As her vocabulary and ability to talk increased the aggression went down. However, I did learn that she could put all of that energy that she was using to be aggressive into screaming. It is always changing!

Here’s what I want to tell you if you are living in this:

  1. The most important thing you can do is have a team of people to help. Seek out a really good psychologist with knowledge of Sensory Processing Disorder.
  2. Look beyond the behavior. I know how hard it is. You see a child doing a bad behavior like hitting and you think it needs to be changed. But often with our kids there is more going on than just a bad behavior. Look at what is happening before and after the behavior happens.   Think of it as a defense mechanism. We see behavior, when our child is really fighting something we can’t see.
  3. It’s not your fault. Dear parent- I know you feel like it is all your fault. I know you feel like you should be able to fix this. But your sweet child’s brain operates a little differently. You are doing a good job. Keep going and don’t give up!
  4. 95% of the population will never understand what you are going through or get it.
  5. After experiencing years of living in absolute crisis, I know that it does get better. I know that it cycles in seasons and some seasons are REALLY bad. But, hang on for the good. Hang on for the better. Remind yourself how much you absolutely love your child and pick yourself up to fight another day, because your child desperately needs you to.

From one desperate parent trying to help her child to another, hang on.  It is worth the fight.  It’s worth every awful moment.  It’s worth every bruise you get and every hurtful word you hear.  Your beautiful child is worth it.  Don’t give up.  Fight for hope everyday.
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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!

 

 

When my child told me Church HURT... sensorymomsecrets.com

When my child told me Church HURT…

Today is Easter Sunday. And most families are at church.  But we aren’t one of those families…

I’ve always tried to keep my faith and my blog separate so if this isn’t for you that’s ok, you can just skip over it. But if you are a person who’s struggled in your faith as a parent of a child with Sensory Processing Disorder, stick around here today you are in good company. I find that on Christmas and Easter I wish that Sensory Processing Disorder and church worked together better. But they just don’t.

So here’s a little bit of our background, Sensory Dad so happens to have been in church leadership and has a degree in theology. I studied enough theology in college to know more than I should. We were extremely active in a church for over a decade. After Miss Sensory was born going to church became increasingly more challenging.

There was before church meltdowns and barely making it to the church.

There were two parents on extreme edge the entire time thinking she could explode at any second.

There were the Sundays that my husband would be up in front of the church and I would wonder if I would have to leave with Miss Sensory and he’d have to figure out a way home.

Then there was the post church meltdowns.

I won’t even get started with the looks. Or the time, I barely left the nursery room and overheard the staff talking about my parenting. There was a lot more than just Sensory Processing Disorder going on during a Sunday morning that made me want to leave the church, but that’s another story.

One Sunday morning as we were trying to get Miss Sensory ready, in the few words she had she told us that Church hurt her. The sound. All the people. The smell.

It was in that moment that my husband called someone to fill his place for that morning and he resigned that night. It’s been a year and half since that day and if this is anything like where you are I want to tell you that it’s ok. If you wish there was some level of normal so you could do something as simple as go to church on a Sunday morning here’s what I want to tell you…

God is bigger than a building, he’s bigger than four walls and a Sunday morning. Even though in our culture we get told that it’s a necessity to Christian faith, I want to tell you that you can worship God at the kitchen sink. He doesn’t care where you are, what he does care about is your heart. He has entrusted you with a dear precious child who’s wired a little differently and often the mainstream Church doesn’t fit well with our kids. Like so many other things in our life we need to adjust to our kids.

I know it’s a hard thing to let go of. But I will tell you that expanding your faith beyond a Church and a Sunday morning service is a challenge on its own and I can tell you that your faith can grow deeper and stronger.

In a perfect world there would be a church that would fit all of us but in our family we’ve always been more focused on what really matters. It’s not about what church we do or don’t go to. It’s about God’s grace and love for us and others. And it’s about our faith. I’ve learned to live out those two simple concepts more outside of the church than inside the church, even as leadership.

If you wish you were in church this morning celebrating the resurrection, remember that it doesn’t matter if you aren’t inside a Church building. Celebrate in your home and your heart, right where you are.
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Dear Special Needs Mama who feels Heartbroken... SensoryMomSecrets.com

Dear Special Needs Mama who feels Heartbroken..

Dear special needs mama who feels heartbroken,

This is an emotional journey. It’s not one I would have chosen, in fact in my case it’s one that I knew would be too much for me. I knew that it was more than I could handle.  When we were filling out paperwork for our adoption, I didn’t select special needs situations.  I didn’t think I could handle it.

You know that saying that God doesn’t give you more than you can handle… yes that saying is completely not true.

If you’ve been heartbroken through the worry of what if something is different with my baby and in getting a diagnosis.

If you’ve been broken in navigating a new language (SLP, OT, PT) and the many medical terms you’ve learned along the way.

If this wasn’t how you thought motherhood would be.

You’ve fought your way to get your child in with therapists that might help. You’ve fought your way to get your child help in school and you’ve won and you’ve lost. And you are battle scarred…

If you thought parenting wouldn’t be this tough. The sleepless nights, early wake-ups, food battles, clothing issues and everyday tasks becoming your biggest challenges.

If you’ve been living life so precise in order to try to maintain some level of peace.

If you’ve been carrying the weight of the mess of every day.

The meltdowns. The yelling. The hitting. The biting.

Finding out that your heart hurts more than you ever knew it could.

If you’ve been making it to endless therapy appointments that may or may not help.

And struggling to get through the day.

It’s ok to feel broken. It’s ok that this is tough. It’s ok to be angry.

It’s ok to wonder where God is in the midst of this and it’s ok to not know.

I’m right there too. I’m in the thick of it. I’m wondering where and if change will ever happen. I’ve done everything I can as a Mom.

Every night, as her eyes close and her little self finally settles down to sleep. I see her peace. But more than anything love overwhelms me. I was just what she needed.  I was what she needed even though I thought special needs would be more than I can handle.  I’m not perfect and this has broken me to pieces but she needs all of me. And she’ll take me broken.

In all the hard and the difficult and the broken there’s a peace to this. There’s something more than meltdowns and challenges here. I don’t even really know what it is yet.

But, I’ve learned to not give up no matter what. No matter how I feel and even when I feel like I can’t go on.

Despite the brokenness, this journey has changed me for the better. It’s changed my heart.

I’ve found my place in this brokenness. To be broken and overwhelmed with love all at the same time.

And you will find your place 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!