Category Archives: Real Life Moments

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!

10 Awesome Things to do with Your Special Needs Child During the Holidays.

I will be the first to tell you that like most of our life, our holidays are anything but normal around here. I had big plans when we would have a family of creating holiday memories and enjoying every moment. Real life kicked in pretty fast and most of the time we are fighting back anger, tears and disappointment over our non-typical life.   But, that doesn’t mean we have to miss out, with some adjustments we can make the most of the holiday season.   The goal really is about making meaningful family time.

We don’t do Christmas concerts because the noise level and large amounts of people are challenging.  We don’t do visiting Santa, because of the wait and the likeliness of a meltdown, she’s just uncomfortable with it.  We don’t do pretty Christmas dresses or meaningful Christmas church services.  But, these are our favorite ways to build memories during the holiday season:

Bake cookies. This is one of our favorite things to do that we involve grandma with. Miss S loves to be able to taste every ingredient and touch every ingredient. It really is more of a sensory experience than anything.

Have a game night or day. Pick out an age appropriate game that will be fun for everyone. Avoid getting stuck on the rules of the game focus on simply having fun together, even if that means not exactly playing by the rules of having a winner. Just enjoy it!

Read Christmas Stories.    We love to read Christmas books this time of year, but let’s face it Christmas books really get read all year long here.

Talk about the real meaning of Christmas.  One of our favorite things is our little people nativity. It’s great because it’s kids proof and I don’t have to worry! I like to read the nativity story as we set up and we leave it on the floor in front of our Christmas tree so Miss S can play with it often.

Listen to Christmas music and do a Christmas craft. Miss S loves crafting. It doesn’t always go well. But sometimes it can be one of the most peaceful and enjoyable parts of our day. Having a visual for her to see what we are doing often helps.

10 Awesome Things to do with your Special Needs Child During the Holidays

Pick out a Christmas ornament every year. Every year, we make a visit to our local hallmark store during a quiet time of the day and spend at least an hour as Miss S picks out a Christmas ornament. It’s always fun to see what she picks and we are usually always surprised. This year it was the Batmobile.

Watch the classic Christmas Cartoons, Charlie brown, Rudolph or frosty the snowman.  Movies are really hard for Miss S, but she usually always enjoys these old school Christmas classics. Concepts like Santa, Rudolph and Frosty are a little challenging in our house too but we just go with it.

Write notes for each other’s stockings. We don’t do the typical Santa fills your stocking.   On Christmas Eve we do a Santa box filled with a few of our favorite things. So we will our stockings during the holiday season with special notes and pictures for each other. This is probably one of my favorite parts of the holiday season!

Adopt a family in need and purchase presents for them. This is a tradition that I hope to start in the next few years with Miss S. It’s definitely a hard thing for her to understand, this year she wasn’t quite ready for it yet, she wanted to give people her toys. So, I am waiting for her to be a little bit older to do this with us yet.

Advent Calendar. We started this last year and for a kid who loves a schedule this is really fun (and it also kind of drives me nuts because it’s another routine I have to do!). We actually have just purchased the Lego advent calendar both years. A few years ago before Miss S food allergies were diagnosed I did purchase a chocolate advent calendar from whole foods and that was really fun.

It’s really about readjusting the holidays to meet your family and your child’s needs. We do a lot of shopping online with our daughter so she can pick out gifts for others because stores are hard. We do baking where she can taste all the ingredients because it’s really more of a sensory experience.

My guess is that you have your own list of adjusted holiday traditions, part of the journey of being a special needs parent is embracing and accepting the parts of your life that are different from what you expected.  May you find the peace of the season in whatever your holiday traditions may be!
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If you enjoyed this post you might also enjoy:
7 Christmas Wishes from a Sensory Mom
When your Christmas isn’t Merry and Your Heart isn’t Light
When Meltdowns Ruin the Fun
Simple Christmas Tree Craft
7 Great Gifts for Special Needs Parents

10 Lessons from Summer 2016

So it’s been a few months since I’ve written anything. And today I’m going to sum it all up in one big long post. We started 2016 knowing this was going to be a year more about us. We’ve spent the past 3 years focused on “fixing” Miss Sensory with minimal growth. We’ve had so much change in the past few months and there’s still more on the way.   But here’s where we were at, what we are learning, what I wish for right now and our lowest point right now!

 1.  Busy is best.  My typical response to no school in the past has been to plan a lot. And this summer has been just that. We are doing a day program for care for Miss Sensory 2-3 days a week, our days that she is home are jam packed with activities (mostly sports). Every day at home is themed (reading, science, math, social skills) although most days she doesn’t want to do any of the fun educational projects I’ve worked hard on.   I post a visual schedule for her on the fridge so she knows what’s going on. Weekends are the worst, we usually end up just jumping in the car and going somewhere, anywhere to waste the day at least an hour away.

2.  A good therapist is worth their weight in gold.
Our main psychologist of 3 years retired. We aren’t even sure what we are going to do. We had already started working with a child psychiatrist—more on that below.

3.  Waiting for testing and diagnosis is like holding your breathe under water …for months.   We are currently in limbo. We were referred to a child psychiatrist mentioned above in order to look at medication (I will be blogging more about this soon). Which has led us to more testing, psychological and specifically AUTISM.   So…. we’ve been waiting all summer for more testing. The label may change but the symptoms are all still the same.

4.  Sometimes our kids can surprise us and it’s these moments that we hold on to for a lifetime. At the beginning of summer we took a mini-vacay that my husband and I will remember the rest of our lives. We celebrated Miss Sensory’s 6th birthday with a few big bucket list items and she was unbelievably happy the entire time. This has never ever happened.

5.  We as parents need to be the best selves we can be. In order to be the best we need to exercise, get to bed earlier, watch tv less, and eat better. BUT, we just want to eat pizza all the time, stay up late, relax on the sofa with some mind numbing television. This one is tough. We are tired, beyond tired. We in crisis everyday.

6.  Acceptance. The place I want to get to but am still so far away from. We still wish for normal but are working toward accepting the whole picture. We went in for marriage therapy to grow better in our marriage and got told what we really need is individual therapy, given our life situation with our daughter it would be beneficial. We need to work on accepting this.

7.  Change is scary. Accepting that how I wanted to parent (being a full time mom) isn’t the best situation for any of us, is one of my main goals right now. I planned my entire life to be a stay at home mom and gave up working when she was born.  Since, Miss Sensory does better around everyone else except Mom and Dad this year has been a year of me trusting and letting go. This is never how I planned to parent, I planned to be present, to be with her every moment outside of school. This fall, I may be accepting a full-time position which will challenge me, stress me out and just might be the best thing for me, for her, for our family. But it’s a scary change. It’s not how I planned but what I planned isn’t working really well.

8.  Tonsils and Adenoids. I hate to say it, but in a big way I’ve waited for this day. We’ve got surgery scheduled for Miss Sensory this summer. And I hate that my baby has to go through this, but I am really hoping it helps with sleep.

9.  I am a therapy drop-out!  I’ve completely dropped out of a lot of therapies this year, mainly Occupational Therapy and also Vision Therapy. We’ve dealt with so much health sickness this year that I just needed a break. We’ve continued with that break and we’ve survived. We’ve actually done better!! Just when you wonder how you could ever go without all the therapy appointments… you do!! And it’s a nice breathe of fresh air!

          Because, this year mainly, I’d like to just be a Mom.

10.  When you let your guard down things happen, not good things. We’ve had some therapists not be as concerned about security with our daughter as we have. We live with the PTSD combat kind of stress that gets talked about special needs parents have…. we are vigilant.  We’ve taken some extreme measures in our house to keep Miss Sensory safe and out of things. And in the past year she hasn’t had too many destructive incidents. Until, this morning. I woke up to utter chaos, she wakes at 3-4am and usually I hear her but not today. So, I did what every good special needs parent would do, completely safety proofed my house again today and ordered alarms. I also cried my way through the day (I also blame hormones), over what I was having to do just because no just isn’t enough.

Cheers may the rest of our summer have less meltdowns, more fun and know that you are an extraordinary parent.
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Budgeting for Special Needs Families

When we started seeking help for our daughter we really had no idea if we could afford it. We had no extra room in our budget and we had no idea what we were stepping into. The good and bad part about starting to get help for your child is that it can often take months to get into children’s specialists. During the waiting time, you actually have time to start looking at the financial side of special needs.

Having a financial plan for all of our daughter’s medical needs is part of what has helped us to be able to provide her with the care that she has needed. We aren’t done yet, and every year I go through this planning process accessing our needs. It’s overwhelming some days but most days I’m grateful we can get her the necessary care.

Know your insurance. The best thing you can do is to call your insurance company and ask them about coverage. Find out how much an office visit to see specialists or psychologists are and ask about therapy coverage for Occupational Therapy, Speech and Language Therapy and Physical Therapy. Along, with any other specialists that you are being referred to. Make sure the facility that you are wanting to go to is covered by your insurance. Some therapy places are private practice and are not covered by insurance.

Estimate your costs. After speaking with your insurance company you can also ask your health facility to give you an estimate on the cost per visit. You will need to then apply your insurance coverage to figure out what your actual costs will be.

Look at your budget. If you are new to budgeting I recommend starting with a few resources (The Budget Mama, Dave Ramsey) to get you started. If you are a budget pro, then you know what you need to do. Find any areas where you can cut back or increase your income. When we were looking at our monthly costs being more than we could fit in our budget and we were unwilling to make any cuts we made the decision to increase our income. At the time, I was a stay at home mom so I actually started with a direct sales company and my monthly sales goal was to cover our therapy expenses. That sales goal is what kept me motivated every month and by the time we finally got billed, I had a stockpile to cover the bill.

Flex Plans. If your employer offers a flex spending plan, don’t forget about using this to cover your child’s medical expenses. This can also help you save money on taxes.

Use extra money. You might be surprised that you may be able to find extra money in your already tight budget. My husband gets paid every other week, so twice a year he gets an “extra” check a month. We take out money for our fixed expenses and living expenses and use the “extra” in that month for medical expenses. I also save any cash as “extra” that we get in our hands or from selling our used items.   We also save our money from taxes as “extra” money. My husband’s end of the year bonus is also considered “extra.”

Don’t push them to send the bill. I know that sounds funny, but I was always more worried about hurrying them up so I could pay a bill then they were for me to a bill. I would call the hospital and ask about when our bill was coming and if they had billed us yet. That was really out of my control and I should have let it go. And here’s why I recommend it. The hospital where we received some Occupational Therapy was actually so behind in billing that by the time they billed us we got a couple of months for free.   What I didn’t know was that if they don’t bill us within a certain amount of time they have to cover the cost of it completely.

Medical Debt. This is something that I go back and forth on. I’m not the type of person who is comfortable with debt. I’m not suggesting that you get into debt that is more than you can handle but in our case we knew how to pay off debt, we could figure out the finances. But, we didn’t know how to help our daughter. We desperately needed help, we chose to get the help we needed and to make it work financially even if it took us a few years to pay for it. So if that is where you are too, remember to breathe. Make a plan and stick to it.

This our third year of navigating paying for medical expenses and it somehow has gotten easier.   When you get through the initial shock of diagnosis and getting to therapy appointments, paying for it seems like the last thing on your mind.  Having a plan for the extra medical expenses helps me find peace in the midst of our chaotic life.  The last thing I should be worrying about is the finances, but sometimes it’s the hardest one to let go of.

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