SPD vs. ASD

Our daughter was 2.5 years old when we first started looking for help. I went to a family friend who is a pediatrician, I brought the list of sensory behaviors that I had checked that she fell into. She wasn’t familiar with Sensory Processing Disorder (SPD) but referred us to a psychologist. We met with the psychologist and asked, “Is this Autism?” We spent the next 3 years working with this psychologist. I never really let go of the question, “Is this Autism?”

I’ve seen this question asked over and over in support groups, what is the difference between SPD and Autism Spectrum Disorder?

What is Sensory Processing Disorder?

We actually have eight senses: touch (tactile), taste (gustatory), sight (visual), sound (auditory), smell (olfactory) and there’s three more vestibular (balance, coordination, spatial orientation), proprioception (sense of muscle and joints) and interoception (internal regulation for thirst, hunger, etc.). Sensory Processing Disorder occurs when the brain receives mixed messages. Basically it’s the way the brain processes the senses.

Sensory Processing Disorder can be a standalone diagnosis and it can also be diagnosed along with other disorders. It is also a symptom of Autism.

What SPD looks like in our house?

Our daughter would have extreme reactions to tactile input:  clothing, soap, water.  She was sensitive to food textures, but constantly put everything in her mouth.  She was sensitive to sounds (auditory) and smells (olfactory).  She sought out deep pressure (proprioception), hanging upside down, rolling on the floor and constantly jumping.  She’s also sensitive to vestibular movement and would fall down frequently.  She would seek out movement though and was constantly busy.

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What is Autism Spectrum Disorder?

Autism is a neurobehavioral disorder that can affect language, communication, social interactions and behavior. It is a spectrum disorder in which it differs from person to person in severity and combination of symptoms. Overall, it affects how kids process certain information for example facial expressions. Basically, it is very complex and complicated and even more so in girls.

What ASD looks like in our house?

Our daughter from a young age had difficulty regulating, she wasn’t able to self sooth and continued as she grew with difficulty regulating her emotions and her body.  Behavior is one of the biggest challenges we have.  She has a huge vocabulary and always has but has always been unable to hold back and forth conversations and gets lost in a room of 3 people talking.   She has difficulty communicating wants and needs and simple social skills like responding back to someone who says hello.  Play for her can be challenging as she tries to navigate a world of social cues that she isn’t aware of, knowing how to play with objects is also challenging for her and she avoids things she doesn’t know.  She gets stuck in reading the same book over and over again and is often unwilling to try new things.  Everyday tasks are extremely difficult with the amount of executive functioning needed to complete a task like brushing teeth.

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How I expected our world to change.

Every year of my daughter’s life I questioned if what we were dealing with was Autism. We started working with a therapist when she was 3 but our daughter wasn’t diagnosed with Autism until she was 6. Her only diagnosis had been Sensory Processing Disorder.

I thought we finally had hit the mark, it is Autism. I thought finally things would change. I thought that now that we had an Autism diagnosis life would change.

When she was 6 we walked into an evaluation room. We told our story again. We went through everything in detail. This therapist worked with our daughter for hours testing her. A few weeks later we met with her and we heard her say your daughter has Autism. I thought I would feel something and I didn’t.

I think I maybe didn’t breathe for a few seconds.

I thought it would bring new hope, new therapist and more open doors but it didn’t.

I thought more things would be covered by insurance and it wasn’t.

The only thing that really changed was the acronym that we use to describe the challenges that are faced in our family and by our daughter.

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For so many years, I felt like I wanted it to be Autism. I wanted it because I thought there was more research, more people experienced with Autism. I thought it would allow more help in school and more acceptance.

I’ve learned that despite having a diagnosis, despite having a signed document from the most well-known Autism center in our state I still have to fight for services. I’m still driving hours for therapy.

I’m still fighting the same fights.

It never ends.

Life is still the same, the struggles are the same, and we just call it something different.

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Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!

 

Are you an Angry Special Needs Mom?

You might notice a quiet discontentment. You might not be a yeller or no matter how hard you try you might always end up yelling at your kids.  You might have some weeks where you are patient and then others where you have completely lost all your patience.  You might snap at your husband over nothing.  Sometimes you might even end up in tears.  You might wonder why you are so unhappy and why you can’t catch your breath.  It’s exhausting.

Sometimes, anger isn’t exactly what you think of it as.

Underneath it all is anger.  It’s been a big part of my journey as an Autism/SPD/ADHD mom.  Most of the time I didn’t even know it was there.  Until, it just bubbled up and I couldn’t keep it bottled up anymore.  I needed to start recognizing it and dealing with it. 

Anger just has a way of creeping in.

It’s anger over fighting for answers.

Not knowing what to do.

Feeling lonely.

Unpleasant behaviors.

Being completely broken.

Feeling jealous of others.

And just feeling all the hurt.

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Anger is a symptom.  It’s the result of pain.  Special needs parenting is not an easy journey.  Anger breeds frustration and impatience. 

I didn’t want to acknowledge that I was an angry mom.  I wanted to ignore it.  I felt guilty about being angry, I knew that my child couldn’t help it.  I knew that feeling angry wasn’t helping our situation.  The truth until I finally recognized where my anger was from, I felt empowered by its purpose, the guilt ended.  Instead of letting the anger take over and building into bitterness and defeat, there was so much good to be found. 

Anger reminded me of my needs.

It reminds me that I need to take better care of myself.

It reminds me how fragile our family life is.  How fragile I am.

It reminds me to breathe.

It reminds me that I’ve held on to everything too tight.  I need to let go.

It gets me to check in, are my basic needs met?

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When your child has a lot of needs and you are working so hard all day to meet those needs as a mom you are easily exhausted and by 3:00 anger is already starting to bubble up. 

Today, was one of those days in our house. 

I had hit my limit early in the day, but there was still more day left to conquer.  I was getting Miss S ready for soccer and she was arguing with me and having a terrible attitude for the 100th time of the day.  I reminded her about what we were working on and I was angry.  I wasn’t patient but I wasn’t yelling at her.  The tears started and she said “I never make sense to anyone.”  My heart dropped, I had just told her that what she was saying wasn’t making any sense.  The second she said that my anger disappeared. 

I know the days of living in survival and being angry about it. 

1.    Remember to breathe.
Take extra time during stressful moments with your kids to breathe before you speak.  Breathe before you act and check out for a few minutes if needed to regain your emotional balance. 

2.    Anger doesn’t have to be a bad thing, it means you are human.
Let go of the guilt.  Let go of thinking that you shouldn’t feel this way.  Anger is a God-given emotion.  Use it for good. 

3.    Apologize when needed and always remember to model healthy behavior for your children.
Sometimes, anger wins.  Sometimes, you yell.  You can always apologize, acknowledge your mistake to your kids and remind them how you love and care for them.

 4.     Seek help if needed.
I’m a firm believer in working through the emotions you are battling as a special needs parent.  If you feel your anger is out of control and you can’t get a handle on it, I would highly recommend finding someone to help you learn more coping techniques.  

5. Remind yourself that your child’s struggles are real.
Sometimes, it’s easy to forget the many challenges our kids have.  It’s easy to get angry about them.  It’s in remembering their difficulties that brings patience and helps quiet the anger.  It’s reminding myself that this is hard for her. Everyday life is hard for her.

 

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!


5 Things You can do to Feel Supported as a Special Needs Parent

I had coffee with another mama a couple weeks ago, her daughter is just a little over 2.  She packed lunch for her and we blocked her into a little area where we were sitting.  For almost two hours we sat and chatted and for the most part this little one ate and played.  Close to the end of our time together, she had broken loose and started exploring the coffee shop.  Each time, her mama would catch up to her, scoop her up and she would giggle in pure joy.

This is a drastically different picture than what we have had raising our daughter.  At that age our daughter would never sit still.  She would be so fixated on what she wanted and there was no holding her back.  Removing her from the direction in which she was going would result in hitting, head banging, biting and screaming at that age.  Our parenting has been nothing short of extreme.

It’s been an uphill battle.

It’s been a process and I only made it through the worst years because of my mom.

We’ve lived in crisis for years and part of our success has been in having support.  It hasn’t been easy to find support, it hasn’t been easy to maintain support.  We often feel like we are lacking in support.  I think a big part of that is feeling like we shouldn’t need it.

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First, ask yourself these questions to better understand why you feel unsupported.

Overall, asking myself these three questions helps me redefine the support that I need and then focus on what I can do.  The first question is, “What’s preventing me from feeling supported?”  Often, this starts with me and my needs.   Do you build walls around your family, because of living in survival mode?  Sometimes, in the middle of trying to be so strong for ourselves we forget to ask for help, we want to conquer this on our own, or feel like getting help isn’t worth it.

After I look at what the why is in preventing me from feeling supported, then I can move onto the next two questions, “How can I better support myself?” and “How can I get better support from others?”  Often, the first things I do for myself is to cut down my expectations and revisit better coping skills.  After that I think about who has offered to help and how I could add that into our lifestyle.  I also try to remember that the next person that offers to help I am going to take advantage of that and say “Yes!” right away instead of saying, “If I think of something I will let you know!”

When we are struggling with feeling supported there are a five things we can do:

Start a support group.

Find other mom’s like you that need support.  One of the benefits of starting a group is that it can also help fill your bucket, sometimes giving to others is the best medicine.  You are not only helping yourself but you are helping others too.

Or if this is a little out of your comfort zone join in a new support group.  You might be surprised by how refreshing it is to find others, even if their stories are different who are experiencing similar changes in their family.

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Think about your coping skills

Sometimes thinking about what is going on in your family, pinpointing what is stressing you out and how you can better deal with it personally can help you come up with healthy ideas to cope with the stress in your life.

Sometimes coping and self-care doesn’t feel like it is worth it.  I often neglect myself, only to pay the price later.  Taking a look at what I’ve forgotten to do and reminding myself that it needs to be a priority helps me remember it is vital to surviving under a lot of stress.

Think about why you don’t feel supported.

Maybe life has gotten really hard and you’ve decided it’s easier to stay home than leave.  I know that feeling and we’ve been there!  Maybe instead of going to the next big family event you could invite one family group to meet at a nearby park.

Sometimes, we’ve put up the walls.  We’ve pulled away from family and friends only to focus on the crisis in our homes.  I am at fault for this one, and I often need reminders to reach out to others.  I get so busy trying to manage our home and keep what little peace we can I forget about everything else.

Make peace with other’s not understanding you.

I crave someone who gets what we are going through.  No one except for you, is going to completely understand your situation.  As hard as they might try, sometimes we can not understand what it’s like to walk in someone else’s shoes.  Make peace with this reality and forgive others for their lack of empathy.

The easy way is to get angry and bitter, fight for being at peace with other’s not understanding your everyday life.  As hard as this is, if you have a friend that doesn’t get what crisis in your home is like but will have a play date with you and not judge your parenting, enjoy that friendship. Sometimes we can sabotage relationships because we just want someone to understand what we are going through.

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Simplify.

Sometimes when life gets overwhelming it’s better to let go and keep things simple.  It’s easy to get overwhelmed with the everyday battles, the repeated struggles and the inability to function.  Sometimes, less is more.  Sometimes, letting go of what’s necessary is the biggest key to survival.  Taking away my own personal pressure we put on ourselves is sometimes the best way we can support ourselves!

It’s really all about balance, managing the daily crisis in our home with some level of support.  It’s often a very fine balance, which I still struggle to maintain.  Hoping this reminds you to weigh the stress in your family life with support from yourself and from others.

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Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!


 

Retail Therapy: Wednesday Edition

(Note: The links in this post are affiliate links, and we will be compensated when you make a purchase by clicking through our links. Thank you for supporting our blog.)

I’ve found some great things on Jane.com this week.  I’m starting to stock up on supper items to keep on hand.  It’s nice to have a bin full of small crafts and activities that take zero planning!

Bracelet Making Kits

These super cute bracelet kits are perfect for Miss S.  with an added fine motor benefit!

There are 4 different options and you can make 2-3 bracelets from each set for $7.49 plus shipping. 

Personalized Coloring Pillow Case

We love out of the box coloring activities, so I knew this personalized pillow case that you can color on, will be an easy win for a project this summer!

This would be an awesome party project or gift item.  There are 34 different styles you can choose from today on Jane for $8.49 each plus shipping.

Empowering Women Tees

I knew I had to have shirt, raising strong girls.  I have always loved the quote:  “Here’s to strong women, may we know them, may we be them, may we raise them.  

Multiple designs available with 15 different shirt color options available on Jane today for $13.99 plus shipping.

Nightlight Color Changing Glow Balls

The gradual change of 7 colors of soft glowing light will soothe them right to sleep. It also has a flat bottom to put on a dresser so it won’t roll off!  They are available on Jane today for $4.99 plus shipping.

Cheeky Door Mats

I just laughed when I saw all these door mats… I need them all!

Several unique and funny sayings for $21.99 plus shipping!

Happy Shopping!

The shirt that describes my life and more of my favorites on Jane.com

(Note: The links in this post are affiliate links, and we will be compensated when you make a purchase by clicking through our links. Thank you for supporting our blog)

Let me just start by saying that sleep deprivation for almost 8 years causes adverse shopping effects.  I may be prone to impulse buying on Jane.com and it is by far where most of my wardrobe and gifts are purchased.  Thankfully, they came out with a shirt just for me…

Jane has these Rose Gold Casual tees for 13.99 + shipping right now!

There are four fun ddesigns and three colors to choose from.

Shipping is $3.99 for the first tee and $1.00 for each additional tee shipped within the same order.

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If you aren’t familiar with Jane.com they are a daily deal website with boutique ladies clothing, kids goods, jewelry and even mens clothing occasionally.  The idea is they are always at an amazing discount for a limited time so if you see something you love, get it before it’s gone!

And a few more of my favorites today:

I bought this dress last year and lived in it!  For $14.00 +plus shipping you can’t go wrong!

Because I’m really a tshirt and jeans kinda girl this tank has been my go to!  Through it on and go!  Jane has it for $12.99 +shipping!  

Last but not least… Jane has this Chaos Coordinator Tee for $13.99 +shipping!

Happy Retail Therapy!!

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