Category Archives: Encouragement

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…

 

 

2 Things That Remind Me I’ve Got This as a Special Needs Mom

Yesterday, I had a break down. We’ve had two surgeries in our house within two weeks (don’t worry we are all ok, just needed a couple things taken care of) and I’ve been on a long stretch of taking care of everything by myself and I can do well for a while, but inevitably I hit this wall. It’s like everything comes crashing down, my patience ends and so does my peace. This special needs parenting thing is rough!!

There are two things that have made all the difference in my parenting journey. They have all helped me feel less alone and more confident as a mom. When I hit those walls, both of these help me remember that I’ve got this.



  1. Support.

When our daughter was 2 years old I started going to Early Childhood classes. The first half of the class was play time with your child, the second half of the class was separated. The teachers took care of our kiddos, while the moms had parenting class. During parenting class we would talk about anything and everything that was challenging us. I started to realize that our struggles at home and our challenges were way bigger than anyone else in the class. No one could relate to what we were dealing with. After our daughter was diagnosed at 3, I finally found people who got what I was struggling with. They knew the battles we faced, because they were dealing with the same thing.

2 Things That Remind Me I've Got This as a Special Needs Mom

This completely changed my world. I felt less alone, I felt like I could be honest about how I was feeling and how hard this journey was. This was a big part of why I started this blog, to share our story and to help others in this journey. Which is why I am creating this new Sensory Parent Support group as a way to expand and connect with you! Because, we all need more support and we need to feel less alone and more understood.

The other major area of support for us has been professionals (Psychologist and OT) who are encouraging and understanding of the challenges we face. We certainly have had some who are more encouraging than others and we have been so appreciative of those who are there to provide support for us, who have given us the reminders we need to hear, who have spoken truth to me when I am drowning in feeling like a failure.



  1. Research.

It’s true what they say knowledge is power!

I have always been the type of person who researches a lot! I never make a major purchase without doing research on it and I have learned how to do many things from reading a book (including dry walling my entire house). So, it makes sense to me that this would be a big part of our journey!

I have found the most comfort in being well researched on whatever we are dealing with. I read every book I can get my hands on. We’ve just added two new diagnosis and quite honestly it’s been overwhelming and hard to understand. I started reading more on ADHD and I felt so much peace about this new diagnosis. It is what I’ve been missing. I need good resources to feel educated as mom and ready to understand how to help Miss Sensory.

The more I know, the more it encourages me as a mom. The more I feel like I understand what we are dealing with and how to deal with it, the more confident I am.

This month I am a part of the SPD Parent Zone’s Online conference for Sensory Processing Disorder Awareness and it has been such a great resource of daily encouragement and knowledge for this parenting journey. I’d love to have you join me and grow in your parenting journey this month. Everyday a different expert in Sensory Processing Disorder is sharing a short video (5-15 minutes), so far it has been a great conference!! You can join in now, and still have access to all the previous videos!

Here are the three ADHD, books I’m starting with this month:  Parenting Children With ADHD, Raising Girls with ADHD and Focused: ADHD & ADD Parenting Strategies.

parenting    girls       focused

 

signature copy

 

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!


 

 

The Mysteries of SPD

One of the most challenging and sometimes comical parts of parenting a child with Sensory Processing Disorder is that it can be so mysterious.   And when I say that here is what I mean. On any particular day, one thing may bother her and the next day it doesn’t. It is always down to the finest details.  A couple of weeks ago I had posted this photo on my facebook page.

The mysteries of Sensory Processing Disorder.

And I subtitled it, “The mystery of SPD…dresses and skirts not OK but pirate dress costume TOTALLY OK!!”

There is so much of our life that we have to live in such extreme precision that trying to figure out all of the mysteries of SPD is exhausting. It challenges us in parenting. It pushes us to frustration and sometimes even makes us laugh just a little. When others don’t understand the mystery of it, it reminds me how well I know my child.

The mysteries of sensory processing disorder.

The other day Miss Sensory was spending time with her grandma. And normally at grandma’s house she loves to do anything and everything her grandma is doing. Grandma asked her if she wanted to help wash tomatoes and Miss Sensory refused. No matter what grandma did she couldn’t get her to wash the tomatoes with her. I simply asked Miss Sensory why and she very clearly told me she didn’t want to get her hands wet. Now this is my child that LOVES swimming. And for some reason today was a day she did absolutely not want to get wet! But, if I would have said swimming she would have said yes. To this day if she gets a drop of water on her clothes they immediate must be taken off, because that is completely not ok.

The way our kids process the daily sensory battles changes daily. What they are able to tolerate one day may be completely intolerable the next.

Food is another mystery in our house. Texture of course is a huge mystery. Cooked carrots can easily be too soft or too hard. Strawberries if too ripe are also too soft.

Clothing really is something that challenges us at our house. This year we bought several Nike t-shirts and they all appear the same. However, this mystery resolves around the sleeves as something about some of them feels differently to Miss Sensory. And, oh for the love of shoes, this is one mystery I may not ever solve. They need to be tight, they need to feel just right.

I’m sure you can think of a few mysteries in your house, I’d love for you to share them in the comments!

To be totally honest, I think Sensory Processing Disorder alone is a mystery for most professionals, teachers and parents.  It’s a disorder that doesn’t always make sense.  It’s confusing, its not a one size fits all diagnosis.  Every single child has a completely different set of sensory challenges and symptoms.  It makes it hard to diagnose, it makes it hard to treat and it makes it hard to parent.

Now in all seriousness, although these seem like small issues, as a parent I know how they can annoy and frustrate you very quickly.

So how do you deal with these?

  1. Anticipate.  As soon as you see a pattern or any type of correlation start to anticipate this and solve as many mysteries as you can.
  2. Embrace the constant change.   I am a super type A person. I dislike change and chaos. I love structure and organization and sameness. So, for me this is very frustrating when one day one thing is not ok and the next day it isn’t. It also makes suggestion #1 really challenging!
  3. Recognize your child is having a hard time and not GIVING you a hard time. I know that it often seems like your child is being disobedient or just trying to be defiant. But as a parent sometimes it is really hard for us to see and for them tell us what is REALLY bothering them.
  4. Let go and laugh. Laugh at how one brand of strawberries is ok but another one isn’t. Laugh at how one day taking a bath is such a challenge because your child doesn’t want to get wet when 2 hours ago she was swimming in the lake.The mysteries of sensory processing disorder.

Not all the mysteries may make sense to us. But to our kids they know. It makes sense to them. They are doing their best to cope with the sensory challenges around them. They know what bothers them and often they are so smart about finding ways to cope with them.

signature copy

 

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!


 

Back to School for Sensory Parents Day 3

Today is Day 3, in our Back to School for Sensory Parents series.  You can read Day 1 and Day 2 for more tips!

If you’ve followed me for a while you know that my belief is that meltdowns are going to happen. They are just a part of this whole neurologically different life. I have accepted them as a part of our life and they will probably always happen.   YAY!

The great thing about school, is that it means that I have several hours away from Miss Sensory to recover and prepare for meltdowns. But those hours of bliss are sandwiched between the most difficult hours of our day.   I have to get Miss Sensory through a lot of necessary pieces to her day. Getting ready and getting to school. And then homework time and bath and bed time.

Just a reminder that in our house, Miss Sensory, holds all her meltdowns in at school and lets it all out only around us at home. Not all sensory kids are this way some are the opposite. I can only share from my experience but if you have a child that has meltdowns at school please leave any tips in the comments!

Morning Routine:

I don’t know how your mornings go but ours were often like dragging myself out of bed after a horrible night of sleep (thanks to Miss Sensory) and pushing snooze 20,000 times, I found myself stressed and saying, “We have to hustle!” over and over. You can about imagine how this didn’t really help decrease the meltdowns in the morning.

One of the best things that helped me prepare for school was taking Crystal Paine’s course Make over your Mornings. I was able to clearly lay out everything we needed to do in the mornings and make a plan for how to get it done. I was less overwhelmed and more prepared for the mornings.

On those days where she is completely off I pull out this handy visual schedule and simply point for the tasks that she needs to get done. The toughest part of the morning routine is not letting being behind schedule or late get to me. The key to keeping meltdowns at bay is often more to do with me staying calm at this point of the day.  

Prep for as much as you can the night before.

I think it’s a fine line between having your child get their things ready and you doing it for them. I generally take the morning prep and have Miss Sensory do the evening prep, but I don’t hold on to it that she has to do it. If she has a very off day, I do it without saying anything to her. Don’t be afraid to let go if you have to!

HOMEWORK TIPS

I’ve heard that kids either love homework or hate homework. We had optional daily homework last year, but chose to do it daily to keep up with routine.

Set up a homework station. A place at home that is the go to spot for homework daily. For us it’s our kitchen table. We are usually have a snack at the same time.

Gather everything that is needed for your kiddo.

Make it fun, have some themed pencils, fun erasers you name it.

Sensory products that can help: pediatric postural cushion, gum or crunchy snack, bouncy bands, weighted lap pad.

Reward: I’m a sensory mom, there’s no shame in my game. Miss Sensory is really motived with fun things so we use that as a reward. For example, if it’s tough we will do one side of homework and break for playing catch with mom or when homework is complete we will play a video or card game with mom or dad.

shameinmygame copy

Have a general plan for after school as set by your child, I mentioned this yesterday, let them decide at the beginning of the year when they will be doing their homework. Make it non-negotiable.

In the next few days we will be talking more about tips to help your child, before and after school routine and homework tips. Stop back to read the entire series.

signature copy