Sensory Processing Disorder (SPD) and Autism: Part One

Our lives are governed by our senses, but what happens when those senses don't play well together?  I decided to blog about SPD this week because it is something that is constantly effecting our family and our lives.  Not only does Peanut have a form of SPD (common in Autism) but we are now coming to terms with the fact that Sassy may have some sensory issues as well. 

SPD (also previously known as Sensory Integration Dysfunction or SID), is defined as, “Difficulty in the way the brain takes in, organizes and uses sensory information, causing a person to have problems interacting effectively in the everyday environment." (The Out-of-Sync Child).  This problem with organizing these signals can make things very confusing, scary and even painful for a child as they try to navigate through the busy hustle and bustle of our environment. 

What is it like to have SPD?

It's hard to understand this concept if you don't struggle with SPD.  Before Peanut received his diagnosis, his Early Intervention Occupational Therapist (OT) informed us she believed he may have SPD.  We had suspected it as well and so we went out and researched it extensively.  After he was diagnosed with Autism I came across a book called, Ten Things Every Child with Autism Wishes You Knew.  (As a side note, I think this book is fabulous not only families with a new Autism diagnosis, but also for anyone wishing to know more about Autism.)  In this book they describe what it may be like for a child with SPD to go through a grocery store.  For me, this was the perfect illustration.

  

       "My sensory perceptions are disordered.  This means that the ordinary sights, sounds, smells tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am just trying to defend myself.  Here is why an ordinary trip to the grocery store may be hell for me.

      My hearing may be hyper-acute.  Dozens of people are talking at once.  The loudspeaker booms today's special.  Musak whines from the sound system.  Cash registers beep and cough, a coffee grinder chugs.  The meat cutter screeches, babies wail, carts creak, the fluorescent light hums.  My brain can't filter all the input and I'm overloaded!

     My sense of smell may be highly sensitive.  The fish at the meat counter aren’t quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, and they’re mopping up pickles on aisle 3 with ammonia- I can't sort it out.

      Because I am visually oriented, this may be my first sense to become over stimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes.  Sometimes the pulsating light bounces off everything and distorts what I am seeing- the space seems to be constantly changing.  There is a glare from the windows, too many items that distract me (I may compensate with tunnel vision), moving fans on the ceiling, so many bodies in constant motion.  All this effects my vestibular sense, and now I can't even tell where my body is in space."

After reading this it's no wonder children with SPD tantrum!  SPD is a disorder that is separate from Autism entirely, although it is common to see SPD in children with Autism.  According to the SPD Foundation 3/4 of children diagnosed with an Autism Spectrum Disorder show significant symptoms of SPD.  Sensory issues may be a major cause of some of the behavioral  issues seen in children with Autism.

Can SPD be treated?

Yes, definitely.  SPD is treated through a form of OT called Sensory Integration (SI).  I have found (at least in New England), that most Pediatric OT facilities can perform Sensory Integration Therapy.  Therapy is play based and the goal is for it to be fun for the child (and family).  The environment is full of lots of sensory stimulating features, but in a controlled environment.  SI Therapy should be family-centered, and some activities should be tailored so they may be done at home as well.  Currently, SPD is not currently recognized as an official "disorder" but is on the list for consideration for the new version of the DSM V coming out in 2013.  Treatment may involve many different activities.  I have found a great description of the many aspects of SI Therapy on Sensory Processing Disorder.com

Recommended Websites and books:

SPD foundation

Sensory Processing Disorder.com

Out-of-Sync Child

Ten Things Every Child Autism Wishes You Knew

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger's.

Hehehehehe...Peanut "reading" The Out-of-Sync Child.

“Be joyful in hope, patient in affliction, faithful in prayer."

Romans 12:12 NIV

God Bless!

Mommy Provost

Our Little Home School. (aka...my catch up)

It's been a while since I've really posted about our home school activities so here is my attempt at catch up (now that I know how to download the pictures correctly!).  Home school for us is not like most families.  Peanut has a bit of a busy schedule. 
What I mean by "school":
Peanut currently receives his ABA therapy through our local school system. They have assigned him to a 1:1 Paraprofessional.  He attends their integrated special education preschool in an ABA based classroom.  The paraprofessional works with him throughout the day doing his discrete trials (complete with data collection) as he goes about the activities in the classroom.  She also guides him through social interactions with the other children.  This paraprofessional is also the person who does his home ABA therapy.  This is all done under the supervision of a fantastic BCBA.  While in school, Peanut also receives, OT, Speech Therapy and a monthly PT consult.  Peanut has seen great improvements with this therapy and we will continue it for the entire school year.  Once the summer begins we are hoping for ESY services for therapy and I may have to take over his ABA therapy.  (I'll eloborate on that more as we approach his next IEP meeting.)  By first grade we plan to only home school and negotiate drop in services.
Our Schedule:
Sundays are church days.  Mondays Peanut has school in the morning, is home for lunch, Sensory Integration Therapy at Easter Seals, and then home in time for a hour of home ABA therapy before supper.  Tuesdays and Thursdays Peanut is in school for a full day (until 3pm) and then home for ABA for an hour before supper. Wednesdays he is in school in the morning and has home ABA from 3:30-4:30pm.  Fridays we have Music Therapy in the morning.  Saturdays I work all day and my angels spend the day at home with their Nana (who is naturally therapeutic). 
How we make it work:

We start the day with a review of our schedule and the calender.  (I do this while they are at the kitchen table having breakfast).  This is a great opportunity to talk about the months, holidays and numbers.  Then if there is time, we will review our PowerPoint from RRSP.


Here are my angels going over their PowerPoint.  (Notice mommy's Starbucks??) 

On Tuesdays and Thursdays Sassy and I do some Tot School together.  We have little red bins (3 of them) that are on our hutch in our dining room, where I put activities I feel we should work on.  If we have time during the week I will also do the activities with Peanut.   

On Wednesday and Friday afternoons and sometimes Sunday afternoons we will do our preschool activities together.  (I will usually leave a simple craft to do with Nana on Saturday as well.)  Although Sassy is only 26 months old, she loves the preschool activities.  She has excelled quickly and has kept up with Peanut with most of the preschool activities!  We currently use 1+1+1=1 for most of our material. The lessons are intended for one week for a Preschool home school plan, and we spread it out into 2 weeks to give us time to really learn it all. We begin with the RRSP and elaborate off of it with other activities.  I will have Peanut cut out (good fine motor skill) the memory verse we are focusing on.  We then hang it on the wall so we can review it when ever we go by it.

I work in as many arts and crafts as I can.  Everything we do, whether it is playing with a toy, doing a craft, reading a book, or playing a game, it all has a therapeutic purpose.


Painting in our new Melissa and Doug coloring books.

I also make sure to work multiple Sensory activities into our days when we are home.  Here are my angels using our new Macaroni sensory bin for the first time.  This took a while to make because I decided to use gluten free pasta which is much more expensive than regular pasta.  I bought an extra bag a week until I had enough to fill the bin.  They LOVE this bin and I recently expanded it into a bigger bin.  This is a great sensory activity as well as a great fine motor activity.  I find numerous chances to begin some great pretend play as well.


I love teaching my children.  It's a true blessing to be able to do this.  Don't get me wrong, it isn't easy.  My husband works 2 jobs and I work Saturdays so we can make it every month.  Thanks to God's grace we are able to do it.  I feel God is leading us to do this and although it's ALOT of work, it's really worth it.

"Direct a child onto the right path, and when they are older, they will not leave it.”  Proverbs 22:6

God Bless

Mommy Provost

An injustice against our community...

      As a resident of the State of NH, as a registered voter, as a taxpayer, and as a member of the Autism community I feel I need to share my feelings of outrage regarding a new bill that will be introduced on Thursday, February 24th to the NH House of Representatives.  I'm speaking about House Bill 309, sponsored by John Hunt, a resident of Rindge NH and the Chair of the Committee for Commerce and Consumer Affairs.  This is a bill to revoke all Insurance Mandates in the past 3 years in the state of NH.  If passed, the bill will not only effect the NH Autism Community, but it will effect many other communities as well.  This bill will repeal coverage for the use of Certified Midwives, the cost of testing for the donation of bone marrow, the continuation of group health insurance after divorce or legal separation, coverage of early intervention therapy, coverage for treatment for obesity or morbid obesity, coverage for hearing aids for those with deafness or hearing loss and it would also revoke Connor's Law, which is the new Autism insurance mandate for NH.  As you can see, this bill doesn't just effect the Autism Community but it effects a vast majority of the State.  It is up to us to take a stand. 
     I first heard of this via email from Peanuts Special Educator.  It was a forward of an email she had received from a colleague.  In is stated perfectly, "Please express your outrage at this violation of progress for our children by calling your House Reps, sending them an email or better yet, attend the hearing and sign in OPPOSED to this bill."
     The purpose of Connors Law is to assist families struggling with Autism to pay for services for their children.  Included in these services is ABA Therapy (the gold standard of treatment for Autism).  The average cost for the minimum amount (25 hours per week) of ABA Therapy will cost a family on average $75,000 per year, and that is just for the minimum!  Some children require as much as 40 hours a week of ABA Therapy.  This therapy will not necessarily recover a child with Autism, but it does give them a fighting chance to become a productive member of society.  The CDC states that 1 in 110 children (1 in 70 boys) will be diagnosed with Autism.  Knowing this, I believe everyone should invest in the future of these children, because they ARE our future.  If 1 in 110 children will be diagnosed with Autism, then that means 2,628 children in the State of NH will be diagnosed with Autism in the year 2011.  (Based off of the 2011 population of NH children reported by the Children's Defense Fund).
      Connors law would require Private Insurers and HMO's to cover up to $36,000 per year for children aged 0-12 years and $27,000 per year for children aged 13-21. As you can see, this only provides a dent in the yearly cost for ABA Therapy, but a dent is better than none at all. In my opinion, it would be irresponsible for this bill to be passed.  The bill states that the purpose of it's introduction was related to "fiscal impact."  What about the fiscal impact on families across the state who are already struggling in our down economy?  Has this man done his homework?  A cost benefit analysis of Connors law showed, "an estimated long term savings to be 597.8 million dollars."  Hows that for fiscal impact?
      How can you help?  If you are a NH state resident I URGE you to take a small amount of time out of your schedule and voice your opinion.  Do as I have and email your Representatives (click here to find out who your Representative is for your area) as well as the Chair of the Committee, John Hunt (jbhunt@prodigy.net ) and Vice Chair Jennifer Coffey (jenn.coffey@leg.state.nh.us ) to voice your disapproval of the bill.  I also ask that we pray for all of those who are traveling to the State House on February 24th to testify against House Bill 309.  Thank-you.

"Cast your burden on the LORD, And He shall sustain you; He shall never permit the righteous to be moved."  Psalm 55:22


 Mommy Provost

Presidents day homeschool activities

Today was Presidents Day for preschoolers in our home school!  This morning after we did our RRSP PowerPoint (Intro to the letter "i", the color red, the number 4, and a rectangle.) Our memory verse is  Philippians 4:13 ("I can do all things through Christ who strengthens me.").  We talked about being strong and we went through the Armor of God power point from 1+1+1=1.  Next we made flags together using crayons and construction paper and taped our flags to staws (I got the idea from the Good Night Show).

Here are my angels showing off their flags.

After Sassy had her nap and Peanut went to his Sensory Integration Therapy, we sat at the table together and learned about what a president is, and who our first president was, George Washington.  I read them a simplified version of the George Washington and the Cherry Tree.  We then made cherry trees using a printable from First School ws.  Here are my Angels working on their cherry trees.  We took a red dauber and made cherries on the trees and then they used markers to color in the rest of their picture.

All in all it was a great Presidents day full of learning and fun.  I hope everyone had a Monday as blessed as we did!

Mommy Provost

PS: I realize I haven't posted about our home school in a while.  To be honest it's because of my lack of computer skills.  I've been taking pictures but don't know how to get them from the camera to the computer!  I know that sounds funny but my husband saves our pictures on our home server (yes...we have our own server) and so if I take them off of the camera the wrong way then he can't do that.  Needless to say, I finally have gotten a little bit of my busy husbands time to get a short lesson (Thanks honey!)  Coming soon....our home school catch up.

Best laid plans...

The alarm went off at 6am as it does every morning in our house.  I hear my husband sleepily get out of bed and stumble into the shower and I lay there listening.  I'm listening for the sound of awake children in the baby monitors by my head.  I hear Peanut make a noise and I know he's awake.  I feel a tight nervousness in the pit of my stomach.  Today’s the day.  I've been weary of heavy metal testing, mostly because I'm afraid of the treatment.  Our Naturopath had called me last Friday and assured me that the chelating dosage was triple checked and we were "good to go".  I had picked up the dosage of DMSA on Monday.  I had a handful of urine bags (because Peanut is not potty trained) and was ready...but nervous.  It's rare for us to have a day at home so it's a treat for us to be in the house all day so I had planned all kinds of activities for the day.  I was looking forward to the time with my children.  I got Peanut up, I changed his diaper and carefully applied the urine bag and gave him his dose of his chelating medication. I gave him his juice and cookie (GFCFSF of course, a bribe to get him to take the DMSA) and was ready for the day. 

An hour later I checked Peanuts diaper and realized it had leaked.  I found the leak, reapplied another bag and sat the kids at the table for some breakfast.  After I got them down from their chairs I checked peanuts diaper and the bag had leaked again.  I was beginning to get discouraged.  I asked everyone and anyone I could to find out how to fix this problem.  A friend called and suggested cutting a hole in the diaper to let the bag hang straight down.  I tried it and it helped!  I got my first little bit of urine and began to feel a little better.  I decided I should try putting cotton balls in his diaper as well and off we went to the drugstore.  While we were out, the urine bag leaked.  I got home, changed the urine bag again and gave the kids lunch.  So far no activities were done and I spent the time chasing Peanut around checking the urine bag for leaks.  

By mid afternoon Peanuts skin was red and raw and the bag had leaked again.  As I was trying to carefully remove the bag he began to cry. "No mamma, stop, it hurts mamma! Owww!!"  It took everything inside of me to stop the tears from pouring down my cheeks.  "I'm so sorry angel, I'm so sorry."  I kept saying.  "That’s it, I give up!  No more bags!"  Peanuts eyes lit up like I had just offered him a lolly pop. "No more bags?" He said.  "No more bags honey." I replied.  He smiled.  We finished removing the bag, I shoved a handful of cotton balls into the front of his diaper and let him run off and play. I was relieved to not have to worry about another leaky bag but began to stress and worry that we wouldn't get enough urine for the test.  I don't want the results inaccurate.  The time period when I got the most samples was when the metals would be at it's highest (due to when the dose of DMSA was given) so I was afraid the result could show high level of something when it really wasn't that high.  So here I was taking wet cotton balls out of his diapers on an hourly basis and squeezing as much urine out of them as I could.  I decided to try to find something to take my mind off the urine test.

I read some more about the latest insurance reform and got even more frustrated.  We recently found out that no matter what happened with the insurance reform mandate our insurance was not bound by state law and they were going to call me back to let me know what they "decide" to give us for Autism coverage.  Hmmmm... pay for services or don't pay for services, what were they going to chose?  It makes me sick to know how many children out there go without therapy for one reason or another.  I checked our bank account and paid some bills.  That was another thing to add to my mounting stress to say the least.  Sassy awoke from her nap and was in a grumpy mood.  She whined and cried throughout the rest of the afternoon.  I knew she was hungry but wouldn't eat anything until supper. 

I made Salmon, brain food, and Sassy's favorite.  She couldn't resist and she ate an entire plate full.  I gave the kids a tub and I calmed a bit more.  They splashed around and we sang songs.  I called my mom after the bath was done and I vented and I cried.  A good cry and talk with my mommy always helps.  She gave me a little pep talk and I felt better.  As I hung up I realized it was an hour past Peanuts usual bedtime.  I took his hand and led him to bed.  We said our prayers and I put him to bed.  I took a deep breath and said goodnight with a bit of exasperation.  I was happy to be one step closer to bed.  As I walked out of Peanuts room and began to close the door, I heard a little voice from the crib say, "I love you."  and suddenly all my stress melted away and my exasperation was well worth it. 

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9

Mommy Provost

Running on empty...

Rushing to get the kids fed and ready, lucky to have gotten a shower and clean cloths on, driving to therapy after therapy, traffic, bills, tantrums, meltdowns, stress, illness, confusion...sound familiar?  As parents we want whats best for our kids, and would do anything on this planet to provide it, but what happens when you're at the point of being just empty.  Suddenly all of the things you used to handle well, aren't going so well anymore.  You're tired.  It's 3pm and you realize you haven't eaten or had anything to drink (other than coffee) yet today.  Can you function like this?  I know I can, but for how long?

I found myself thinking about this a few weeks ago.  We feed both of our children a healthy, well balanced diet.  We spend hundreds of dollars a month on organic non-GMO food (as well as GFCFSF) to ensure they have a healthy future ahead of them.  We want them to eat these foods so that we don't increase their risk for tumors, cancer, hyperactivity, immunity issues, as well as other conditions.  I was sitting thinking about how little we care for ourselves as parents.  What good am I to my children if I get sick?  Who will take care of them?  Can others care for them like i would?  If I don't take care of myself then I can't take care of them. 

My point is, it is ESSENTIAL that in order to care for our children we HAVE to care for ourselves and stop running on empty.  Fill your tank!  Get plenty of sleep.  Drink plenty of fluids (but obviously still including that coffee of course!).  Make sure you eat meals.  Find an outlet for your stress.  Get exercise.  Make sure you make it to your own appointments! (yearly check-ups, dentist, optometrist)  If you need help ask for it and accept it. There is nothing wrong with that!  You're not super woman and there is no need to be!  Take time to play with your kids and just enjoy them!  (I find I'm so therapy focused that sometimes I forget that when the kids are playing I should be having fun too!)  Take some time to relax and do some reading. 

A few weeks ago I began to work on this.   I started to go to bed earlier.  I began to eat, not just eat but eat organic.  I began drinking more teas.  On Mondays there is a time between running errand and picking up Peanut when Sassy will fall asleep in her car seat and I have 30-45 minutes of time.  I decided I should take that time for me.  Not for paperwork or phone calls, but for me.  I park in the schools parking lot and I just sit.  I may read a book, I may listen to music, or I may just sit and take in the silence.  I have to say I have felt amazing!  It's crazy what a shower, nutrition sleep and quiet can do for a person! 

I mentioned I had been prying more.  Spending time with God will help to melt that stress away.  The more I did this the better I felt.  We need to care for our spiritual lives as well as our physical ones.  I notice a difference on the days when I get caught up in everything that is my life and I am too busy for God (I know that sounds terrible but I know it's true for many of us).  These are my bad days.  These are the days when I feel that tight stressed feeling in my chest.  These are the days when I need God the most, and my kids feel it too.

Psalm 62: 1-2 says, "My soul finds rest in God alone; my salvation comes from him.  He alone is my rock and my salvation; he is my fortress, I will never be shaken."

God Bless all of you!

Mommy Provost

GFCFSF Chicken pot Pie

I recently was given a GFCFSF recipe for Chicken Pot Pie from a friend of ours.  I tried the recipe last week and it was DELICIOUS!  My kids loved it and both of them asked for seconds!  It came out really good, and easy to make as well!  Here is the recipe she sent me (Thanks Susan!!).

GFCFSF CHICKEN POT PIE
1 pound chicken cubes
1 chopped onion
3 chopped celery ribs
3 carrots
1 cup of peas
(Any other veggies you'd like in a Chicken Pot Pie Susan suggested mushrooms or potatoes)
2 tbsp GFCFSF Margarine
Bob’s Red Mill biscuit mix
1 1/2 cups chicken stock
Salt and pepper
1 tsp of thyme (optional)

Step 1: Preheat your oven to 350 degrees F.
Step 2: Sauté all of the veggies until they are softened but still have a little crisp to them.
Step 3: (Make the sauce) Stir the margarine and 2 tbsp of the biscuit mix flour in a skillet until the margarine melts and it forms a ball. Then add the chicken broth and stir. Bring to boil and it got very thick. Thin if you need to. (She made individual pies so she could make theirs with filling that was not seasoned with thyme)
Step 4: (Make the crust) The pot pie crust is made out of Bob’s red mill biscuit mix. Make the crust according to the package directions for basic biscuits. (it’s the same "flour" used in the sauce). Using your hand form disks about the size of the pot pie ramekins and set them on the tops of the pies as they were formed. Leave a gap approximately 1/4 inch along the sides. (The adult pies get a bit more thyme mixed in the dough.)
Step 5: Bake the pies in the oven for approximately 45 minutes (The liquid will bubble up at the edges of the pie so be sure to put a cookie sheet under the ramekins while they cook)
Let cool and enjoy!

Bon Appetite!

Mommy Provost

Yummy GFCFSF muffins!

It's funny how snowstorms inspire me to cook.  Tonight, I decide it was time for some muffins.  My only dilemma is that both my kids are now low sugar.  I'm always game for a new challenge, and tonight I actually had some success!!  The kids loved these muffins, and I wasn't worried about letting them eat them either.  It's nice when a treat is also healthy!  I didn't have any blueberries in our freezer so I used Raspberries.  You could use any fruit you want though. These muffins come out incredibly moist! So here is my recipe for our Yummy GFCFSF Low sugar, egg free muffins:

2 cups GFCFSF baking mix (I use Arrowhead Mills because it's 73% organic)

2 tsp Stevia extract (natural sweetener)

1 cup organic coconut milk

1/4 cup coconut oil

1 tbsp flaxseed meal mixes with 3 tbsp hot water (egg substitute)

1 tsp organic vanilla

1/2 cup water

1 1/2 cup fruit (fresh or frozen)

Preheat your oven to 375 degrees.  In a bowl mix the baking mix and Stevia.  Then combine the dry ingredients with the coconut milk, flaxseed mix, vanilla, and oil.  Fold in fruit.  Spoon mixture into a muffin tin and cook for 20 minutes or until muffins are cooked and knife come out clean.

Hope you enjoy!!
Mommy Provost