Our Sensory Processing Sleep Solutions...

I have two sons with special needs.  Jordy is 12 and has autism, anxiety, and OCD as well as severe Sensory Processing Disorder.  Cam is 6 years old and has 22q11.2 Deletion Syndrome, PVNH, EDS, and several medical problems related to all 3 of those diagnosis'.
One of the biggest issues parents of special needs children deal with is sleeping.  A lot of kids continue to keep their parents up all night the same as an infant does for years.  I am fortunate in that my kids don't usually keep me up all night, but we have our own set of problems.  This summer we had an experience with Cam that made me realize how dangerous sleep can be.

A lot of kids with special needs have sensory issues.  When they struggle with several it is diagnosed as Sensory Processing Disorder.  Basically all the things that affect our senses is processed differently for them.  Some are seekers, and some are avoiders.  Jordy has mostly seeking tendencies, but also has a few avoiding issues as well.  He craves intense foods and flavors because of the lack of input he receives through his mouth.  He will often chew on things when he is anxious.  His favorite food is onions...and has been since he was about 1 year old.  He has been known to add onions to Lucky Charms cereal! It was one of his first signs that something was a little different than the average kid.

Cam is more of an avoider.  Loud noises and sounds really bother him and he will cry until the sounds are gone.  Going to sporting events, plays, amusement parks or even movies are literally painful for him.  I was able to buy some headphones for him so he is able to enjoy life.  It has made a HUGE difference.  I remember the first time he used ear plugs.

I started to avoid taking Cam to places I knew would be too loud for him.  It had been about a year since I had taken him somewhere that was loud so I kind of forgot what a problem it is.  We went to a BYU football game and as soon as we got there I regretted it.  He was SO excited to go, but the stadium was so overwhelming.  The roar of the crowd and the unexpected canons going off put him over the edge.  He buried his head in my lap covering his ears and cried.  I felt awful.  How could I forget that he wouldn't be able to tolerate the sound?!  It was all I could do to not start crying with him.  I convinced him to go into the bathroom with me so we could regroup for a minute.  I spent some time calming him down and telling him how sorry I was that I forgot it would be too loud for him.  I told him that we could walk around to all the stores in the stadium and look for some earplugs.  As I was having this conversation a nice lady was listening in.  She offered me a pack of earplugs she kept in her purse.  She saved the day for me and for Cam.  We got them put in and headed out to find our seats.  When we got out there and the crowd started going crazy Cam looked over at me and got the biggest smile on his face.  He said, "It doesn't hurt!".  He stood up the rest of the game cheering, singing, and laughing the entire time.  It was adorable.  The first thing I did the next day was buy some headphones.  His life is so much more fun!

The list of both of the boys sensory issues is long!  It could (and should) fill a separate blogpost!

Sensory issues can impact a person's life more than any of us realize until we are the ones dealing with it.  The book, The Out-of-Sync Child is really great for figuring out whether or not your child is dealing with sensory issues.  It was a game changer for us and was what really helped us get on the right path for getting Jordy diagnosed with Autism.  As a parent that deals with sensory kids you start to look for anything you can that will help you child function in a world that is too overwhelming.  When Jordy was chewing everything to pieces in school I offered to send bubble gum with him.  I wondered how the teacher would react, because bubble gum is against the rules.  "YES! Send bubble gum!" was her reply.  When Jordy had the urge to chew on things he chewed gum instead.  It worked!  A simple solution to a huge problem.

Sensory issues can often cause problems for sleeping as well.  Cam and Jordy both tend to cover their entire bodies when they sleep including their heads.  I will often go and uncover both of them during the night, but they will immediately cover their heads again.  I haven't worried too much about it assuming they are both filling some sensory need that they have.  This summer however my perspective changed.

I was volunteering at a youth group camp for our church.  My mom had agreed to keep my kids for me while I was gone.  The kids are always excited about having a sleepover at Grandma's house.  Jordy was on the couch and Jacob and Cam were sleeping on the floor with some big blankets that Grandma laid out for them.  In the middle of the night my mom woke up to a strange noise.  She described it as one of the scariest things she had ever heard.  She wasn't sure if it was an animal outside, she couldn't imagine what could be making such an awful noise.  She went to check on the kids just in case.  What she found was even scarier than the noise.  Cam had wrapped himself tightly in the big blankets.  He had actually mummified himself.  He was not getting any oxygen and the sound she was hearing was his body retching for air.  The scariest thing...it didn't wake him up.  He is a deep sleeper and suffers from sleep apnea.  The lack of oxygen didn't wake him up, but did cause his body to react as he tried to breathe.  My mom rushed to untangle him from the blankets that were wrapped so tightly around his face and body.  Cam never woke up through the entire ordeal.  When I called my mom the next day to thank her for watching the kids she told me the story.  It was so scary to think about what might have happened if my mom hadn't heard him.  I was just sick to my stomach trying to come up with ideas that would literally save Cam's life during the night. I immediately began to research blankets for special needs kids.  There was not a lot of options or help.  I came up with the idea of crocheting a blanket with a giant hook and a double crochet knot so there would be big holes in it for him to breathe through.  We headed to the fabric store to pick out a soft yarn that was a color he liked (orange...I hate orange) and I began making the blanket.  I sat next to the pool in 100 degree weather crocheting my life saving "blankie".  It worked as far as covering his head and allowing him to still breathe.  There was a small problem though.  Cam didn't stay warm under it and he started going around the house finding other blankets to cover up with at night.

A few months before Cam had his sleeping scare I had been looking for really cute bedding for my 3 year old little girls room.  I came across a new company called Beddy's that was doing a kick starter campaign for their new zipper bedding designed for kids to be able to make their "bed with ease"--Beddy's.  It was an idea stemming from a mom not being able to make her kids bunk beds (we have this issue as well, it's just at the bottom of my issue list;).  I had ordered one of the comforters for my daughters bed because it was darling and just what I was looking for.  I had to wait awhile for the order to come in though since it was a kick starter campaign.  As I was trying to figure out what to do for Cam I remembered the zipper bedding.  I looked through the options and figured it was worth a shot.  Bedding that he would not be able to wrap around him because it is literally zipped to the sheets...it was the best option I had seen.  The bedding was not made for kids with special needs.  It is a great idea, really functional, and super cute.  That was what the company was aiming for.  What they ended up with though for me and my family is a product that offers me a good nights rest knowing that Cam is SAFE and WARM in his bed sleeping.  We have had the bedding for almost 2 weeks now and it is a huge hit!  I also got one for Jordy hoping that it would also help his sensory sleep issues.  I have a weighted blanket for Jordy, but it doesn't cover his entire body so his feet are usually left uncovered and cold.  They both LOVE their new Beddy's.  They also can both make their own beds now, which is awesome and has helped build up their self-esteem.  We have already had one bed wetting experience and also Cam woke up with blood coming out of his ear one morning and they have washed great and the stains came out easily!  They are super soft and comfy and my other kids were asking for their own Beddy's the next day.  I'm not sure how many other families with sensory kids would benefit from this bedding...but it has really helped us!

My son and the son of this mom inventor (Betsy) had played ball for a couple weeks together and we had become Facebook friends.  This is how I found the kick starter campaign in the first place.  I gave her a call to tell her how amazing it has been for us and she said she had many other customers with special needs kids emailing her with similar stories.  I have never endorsed a product through my blog, and I have not received any money from the owner's of Beddy's.  I just know that a few months ago I was stressing to the max imagining Cam suffocating in his sleep, and I looked for personal experiences through the internet to help me.  My hope is that if anyone is struggling with the same issues I was, they will see this and be able to rest a little easier!

I asked Betsy if she would mind if I talked about how awesome Beddy's is in a blogpost.  Her response was awesome and truly shows her character.  She has offered a special discount code to use at check out for all my readers!  It is a savings of $30 off the purchase price and they are donating $5 to the Dempster Family Fund which funds research for 22q11.2 DS every time the code is used!  I think this is awesome and I'm so grateful that she is offering it!  The code will be good for orders through the end of November 2014.

Use code Beddysfor22q at checkout.

Check out how soft that inside layer is!

 I never claimed to be a professional;)

 The perfect combination for our different sensory needs!!

 Jordy uses his weighted sensory blanket over his Beddy's now!

This bedding is just darling!

Thanks Betsy, Angie and Beddy's for making my nights and mornings a lot better!

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List and Links to Blog Posts in 2014...

This is a list and the links of all my blog posts this year in the order they were written.


"My name is Julie"...originally posted Nov. 7, 2012 went viral Jan. 12, 2014

Who's the Boss? Our experience in talking back to OCD...

Our Pilot EARNED his Wings!

I built my Self-Worth upon the sand...

The Resurrection

Good News for Cam!

Finding Peace in Finding God's Will...

What Makes a Winning Season?!?

Dating and Marrying a Widow...

Don't Miss Out on the Beauty of Your Life...

The Sealing Issue...why marrying a widow is a matter of faith for me.

Willing to Submit to All Things the Lord Seeth Fit to Inflict Upon You...

Don't let the Good Things, Be the Hard Things...

Appreciation for Mother's Day...

Daddy Stories, and Daddy Bears...

Speaking in Lacey, WA

Happy Birthday Jake...he would be 40 years old!?!

Memorial Day Over The Last 10 Years...

Jordy Facing His Fears...

Love at First Sight...

Jordy Facing His Fears...

So for anyone that knows Jordy well, you know how big of a deal it is that he is standing next to a police officer smiling!  Jordy has had a massive fear of police officers since he was 3 yrs old.  Over 18 months ago Jordy experienced a massive OCD breakdown because of an experience he witnessed at his school.  Read more about his breakdown here.

We spent over a year in therapy working on his OCD.  Jordy is in fifth grade and that is when our school does the D.A.R.E. program.  Jordy has worked closely over the last 6 months with a few different police officers in the program.  We made the officers aware of Jordy's fears and they were so great with him during the last 6 months.  The timing of Jordy finishing therapy and the school starting the D.A.R.E. program was perfect.

Today was the D.A.R.E. graduation and it brought tears to my eyes to see him so confident around all the officers.  He didn't have any anxiety through the entire ceremony.  The greatest thing to see is that he finally understands that police officers are here to help and protect us.  I am so proud of Jordy for facing his greatest fears and overcoming his OCD!  This is an awesome day for us!

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What Makes a Winning Season?!?

*Fanatics is currently running a challenge called Family Fanatics, so I’ve decided to submit this story to be a part of the initiative. Fanatics is an online retailer of all sorts of sports merchandise and apparel: MLB caps, NBA jerseys, and much more.

We all say it when our kids are playing sports..."It's not about winning, it's about how you play the game."  I have heard coaches say this for years as well as parents.  But, do they really believe that?  Do they really mean it?  Is it about how you play the game?

It is more fun to win!  I have been on winning teams and I have been on losing teams...(when I say "I", I mean my kids)  It is always more fun to win.  However, there are good lessons to be learned from losing as well.  Sometimes in the world of sports, it can mean a lot more than just lessons in winning or losing a game...it can change a child's life!

I wonder what kind of coach I am going to be dealing with every new season we start.   In my 13 years of sports, 5 sons, playing baseball, basketball and football I have seen a lot of different kinds of coaches.  I still get anxiety when I see a coach from a baseball season 3 years ago for one of my older sons.  To this day that season still remains my worst season ever!!! I still feel a twinge of anger when I see Jordy's coach from one of his beginning years of football.  They figured out that he had a really high pain threshold and used him as tackling practice for his "X" men until I realized what they were doing!  There have been coaches that are there for one reason...promote their own son, (regardless of the son's abilities).  There have been coaches that don't have a son playing at all.  They coach every year the same age group for our baseball league just to provide an excellent learning experience from coaches that know the game.  (His adult son would come to some of the practices and he was a pro...of some sort?!)  The majority are just good Dad's trying to be involved with their kids and provide a fun year for their teams.

Once in a lifetime though you find a Coach like Rick Medina.  The first time I saw him I was terrified!  He looked really intense and was the coach for Jordy's team for 9 and 10 year olds.  He was showing the kids different baseball hand signals that he would be using.  It was clear he knew the game of baseball, and by appearances it looked like he planned on winning!  I looked over at my dad and said, "We are screwed!"

Jordy was pretty good at baseball.  He LOVES the game.  He is more athletically inclined than some of my "typical" kids.  But, he is autistic, and he has learning disabilities, including auditory processing which makes it hard to understand directions, and even harder to follow them.  His expressive language is much higher than his receptive language, which means...he talks like he knows and understands what people are talking about.  He will even tell you he understands...but in reality he doesn't have a clue of what you just asked him to do.  Up until this year he could blend into the other kids that were just a little naughty and didn't "want" to listen.  Not this year.  The kids have all matured and can understand and follow complex directions.  Jordy knows to hit the ball, catch the ball, and run the bases faster than anyone on your team.  That's what he could do, and that was all he was capable of.  I was going to have to tell the Coach that Jordy had a learning disability and would need everything simplified.  He would always need to say Jordy's name a few times, make sure he had eye contact, and touch his shoulder or arm to have any chance of Jordy knowing that he was talking to him.  It was still unlikely he would do what the coach asked.  I hoped and prayed that this intense looking coach would have some patience for him...and then I prepared for a horrible year, knowing that it was most likely Jordy's last season playing.

Well, I could not have been more wrong in my quick judgment of the intense looking coach.  Rick Medina is a man that knows what is important in this life.  He is a man that wants to teach his son more than just baseball, he want's to teach him compassion for other's that don't have it as easy as the rest of the players.  He wants to teach all the player's patience, kindness and the importance of every player on the team.  But more than anything he wants to make Jordy feel successful, he wants Jordy to know that he is a valued team member, and they couldn't do it with out him on the team.  He wants to build his confidence and provide an atmosphere where Jordy can feel like every other kid and progress in his baseball skills.  He is one of the nicest guys I have ever met.

The first year we played with him we had a losing year.  We won some games and lost some games.  But Jordy loved his team and loved Coach Rick!  They do a draft every two years in our league and I was thrilled we would get one more year to play.  Our second year playing the team really improved.  We were undefeated and having an amazing year.  I was amazed at Rick's patience for Jordy.  At times it seemed better than my own patience for him!  He never once snapped regardless of how bad his timing was.

-To give context to what it is like to Coach (or even be around) Jordy-

We call Jordy the question master.  He asks questions...well, constantly.  He wants to pitch every new inning...he isn't a pitcher.  He doesn't like to play out field because it's "too boring"...and he isn't afraid of saying it.  Last year he had his major OCD breakdown (click here to read about it) during baseball.  He would take his hat off to pray while playing second base every minute or so.  (The baseball season last year during that time was the only relief and joy that Jordy had from his OCD)  He asks the Coach questions during the game, regardless of what is going on almost constantly.  He interrupts the pre-game pep talks, the post-game pep talks, and through the entire game follows the coach around like a puppy dog asking his questions!

I worry every time that Jordy does this.  It wears even the best of people out.  Last season there was a time that I thought Rick would lose it, and I wouldn't have blamed him a bit.  We had an undefeated season so the pressure got more and more intense for keeping it that way with each game.  We had first place in our sights and the whole team could feel it.  Well, we had a few really bad innings and we were losing bad.  I can't remember exactly what had happened but I remember that something had caused our coach to go meet with the other coach and the umpire.  It was a heated discussion.  As coach Rick came back toward the dugout Jordy ran out to meet him half way...I could see the frustration on Rick's face with the call that had just been made.  "Coach, Coach, Coach, can I pitch next inning?" Jordy begged.  (Here it comes...he is going to snap at him and just crush him) I winced...trying to call Jordy back to the dugout.  Rick looked down at Jordy's face, put his arm around his shoulder and with a smile said, "we'll see big kid".  I couldn't believe the pure kindness I witnessed my autistic son receive...this in not something that happens often!

Toward the end of the season Jordy had been practicing his pitching and the Coach had promised to put him in.  Usually he would wait for a comfortable lead to put in kids that wanted to learn to pitch.  Rick had made a promise, so even though we didn't have a comfortable lead he put Jordy in to pitch.  I was a bundle of nerves watching him pitch, worried that he would do terrible and we would lose the game.  Jordy pitched 3 innings in a row striking out most of the players.  They didn't score any runs during all 3 innings and we won the game!  Everyone was cheering for Jordy!  He was the hero of the game and was on top of the world!  It was the highlight of his sports career!  He will always remember that!

During another game it would be the coach's son, Ricky that would cause me to wipe away tears at the baseball game.  We were down 3 runs and Jordy was up to bat, with 2 outs in the last inning of the game.  The pitcher threw fast and hard and it caught Jordy right in the back.  He dropped in pain, (which is very unusual with his high pain tolerance) so I knew he was hurt pretty bad.  Jordy tried to jump up and hobbled through sobs to first base trying to suck it up.  The bases were now loaded.  Ricky was up next...the coach's son.  With a swift swing of his bat he hits a Grand Slam.  The crowd went crazy!  We were jumping up and down screaming for Ricky and for our team!  We came back and won the game!  I rushed over to the dugout to meet Jordy in there and make sure he wasn't hurt too bad.  The team all ran out to Ricky to slap him with their mitts and cheer him on for hitting a Grand Slam and winning the game.  I watched as Ricky pushed through all his teammates and coaches and headed straight for Jordy, he patted him on the back and with sincerity asked Jordy, "Are you ok?  I'm sorry you got hit so hard!"  I honestly cried.  I don't know any other 10 year old boy that after hitting a Grand Slam would give up his moment of glory to make sure his teammate was ok.  Amazing coach=amazing son!

Jordy and Ricky

Last year we ended up in second place over-all.  Jordy will always remember that season.  The league made year books that could be purchased at the end of the season...I almost didn't buy one.  Jordy begged to get one though and I gave in.  He has carried that year book with him for a year now.  He reads and rereads it everyday.  He sleeps with it at night.  It has pictures of every team in the league and has the players names and coaches names in it.  I never really looked at it until a couple weeks ago when Jordy said, "Oh Mom, I just love reading this part!"  I finally took the time to read what the coach had put on our team page.  I had looked at it several times when he showed me...but hadn't read it.  Tears flowed again as I read the words that Jordy had been clinging to for a year.  The first couple lines tell the players names.  Then it tells about Ricky's awesome Home Run that won the game, and another kid on the team catching a game saving fly ball.  Then the words..."Jordy Jorgensen pitched a shutout 3 innings to secure the win for the Cardinals in his second debut of the year."  What a gift for the coach to give Jordy.  I thanked Rick at the next game that we had and told him about the tattered book that Jordy has cherished for the last year.

This year is our third year with Coach Rick and Ricky.  The amazing thing with Rick is that he didn't give up on Jordy once he found out that Jordy was autistic.  He has continued to treat him like all the boys.  Coach Rick has taken the time to figure out how Jordy learns best and coaches him!  He has helped him to continue to improve his skills and become a better player with each game.  Jordy thinks he is the best player on the team...and at times, it seems like he thinks he is one of the coaches too.  To most kids on his team Rick will always be the awesome fun coach that taught them a lot.  To Jordy and to me...Rick will always be the Coach that gave Jordy the best baseball years of his life.  He is the coach that has made it so that Jordy could continue to play in the same league as all his friends.  Coach Rick has made Jordy feel like a star player!  He has been the coach that has allowed me, the Mom not worry that Jordy is going to have a bad experience or be bullied.  Regardless of winning and losing the games, our years with Coach Rick will be remembered as the time when I saw a coach really understand that it doesn't matter if you win or lose the game, it's how you play the game. 

That is how to truly have a winning season!

Thank you Coach Rick and Ricky for all you have done for us...we will never forget it!

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Who's the Boss? Our experience in talking back to OCD...

I had seen signs of OCD in a couple of my kids very early on.  Nothing to extreme, but little hints of it were there.  They didn't like the "silky" way their hands felt after eating greasy chips, or wouldn't pick things up with their hands if they were dirty.  The first time it really knocked the wind out of me was when Josh was 4 years old.  He came running inside to tell me that he had made a picture with chalk for me outside on the sidewalk.  I stepped out my front door to see the picture my son was so proud to show me, but found a heartbreaking reality instead.  I saw a picture drawn with two stick figures holding hands, a Mom and her son.  But that wasn't all...it had a big circle around it and then a big "X" to cross it out.  As I walked down the 30 foot walkway in front of our home I saw the exact same picture drawn over and over, all with a big circle around them and then crossed out. At the end of the sidewalk remained a picture exactly the same as all the others, but it wasn't crossed out.  Josh said to me in his 4 yr old voice, "The other pictures weren't good enough for you, but now there's no more sidewalk, so I like this one."  I took him in my arms and told him how much I loved all the pictures he drew for me, and quickly wiped away my tears before he could see them.   Josh was 3 when his Dad died and he had really struggled with it.  We had been working on therapy, but this was the first moment that I realized we may have a serious problem.

When Josh was in Second grade however, I became a big fan of OCD.  My therapist had told me that a person with OCD will always struggle with different OCD tendencies so if it surfaced in a healthy behavior it was ok to just go with it, unless it became detrimental.  If it is a positive thing for the child then don't worry too much about fixing it.  Well,  Josh became obsessed with a reading challenge at school that the principal gave.  He wanted every child to read 100 hours during the school year.  When Josh started 2nd grade he was a little below grade level.  His OCD took hold of this challenge and I let it go.  He began reading an hour or more every night.  He would ask me to pause his minutes if he needed a bathroom break or a drink.  He was determined to be the first kid in school to finish.  He ended up being the second kid in school to finish and was done with his 100 hours by November.  He told Grandpa one weekend that he couldn't come visit because he needed to read 7 hours over the weekend.  My Dad called and said he was concerned I was expecting too much out of him and that no 2nd grader should have to read that much over a weekend.  I explained that he had the next 6 months to read those 7 hours and it was Josh's deadline...not mine.  After he finished the challenge the next time they tested his reading level he was at a 6th grade reading level.  He is in 8th grade now and continues to test off the charts in reading.  It took him from the bottom of the class to the top.  Thanks to his hard work...and OCD.

Josh won a writing contest a few months after the reading challenge!

The last year however, OCD became my worst enemy.  Jordy, my autistic son struggles with a lot of things.  One of them being severe anxiety and OCD.  He has had a fear since he could talk that the police would come and take him.  He would panic when he heard sirens that they must be coming for him.  He would be fearful that he was breaking laws constantly.  It was something we had dealt with his entire life, so I got very used to telling him that, "Police never take children.  They are here to help us and protect us and if he was lost they would help him find me, but never take him away from me."  It was routine conversation.  Well, in November of 2012 there was an increase in his asking again.  He also started repetitively praying and repenting throughout the day.  It became frequent enough I went in to the school to ask the teacher if he was praying at school as well.  She responded with "To be perfectly honest, I haven't noticed we have had so many problems with "Johnny" (not his real name) this week it has taken all of my focus."  I asked what kind of problems and her response felt like I had been kicked in the stomach.  "Well, he has been so out of control that we have had to have the police come and remove him from the classroom twice.  He was attacking other children and the staff as well."  I couldn't believe it.  During that week I probably told Jordy 100 times that, "Police never take children".  He couldn't communicate what he had been seeing at school that week.  So the trust that Jordy once had in me was gone.  *Police DO take children, they actually come into your classroom and take you away and put handcuffs on you!  So Mom is either lying to me or she is just dumb!* 

We tried to recover the situation, by explaining why they needed to take Johnny, and that they didn't take him to jail.  They just took him to help him calm down and he is still with his family.  Part of the problem was Jordy identified with Johnny.  They went to speech and resource together and had some similar problems.  *What if I am bad like Johnny?*  Johnny was hitting and kicking the women staff members.  *What if I hit or kick a girl, I could go to jail, and then I won't live with Heavenly Father.* 

By February OCD had won.  Jordy's usual techniques of asking me if he was going to jail would no longer soothe his fear of police.  He began asking EVERY girl, or women he saw, "Did I kick you? Did I hit you?" even if he wasn't even near them.  He asked strangers in the grocery store, every visitor that came to our house, everyone at church, every little girl at school, every teacher and staff member at school.  He prayed immediately after asking his questions.  So that is how we lived until we could get into therapy.  He asked his questions, and then prayed,  ALL DAY long, EVERYDAY.

In the first few weeks while waiting I tried to use some of the techniques they use in helping autism behaviors, and that only made it worse.  He began asking if he was holding up his middle finger.  He stopped using his hands and kept them straight and stiff to be sure that he didn't hold up his middle finger.  He added that to his routine questions, "Did I hit you, did I kick you, did I hold up my middle finger, did I say a bad word?"  Those were the only words he used for 3 months.  When he was in the middle of a baseball game he would take his hat off while on second base in between plays and pray.  He would step out of the batter box in between pitches, take off his helmet and pray.  He paced back and forth during class mumbling prayers to himself and asking the other kids his repeated questions.  We took a 5 hour road trip during this time and Jordy literally asked his questions every minute.  The longest time he sat silently was maybe 30 seconds, and when he took those small breaks it was to repent...just in case.  When Jordy was in a situation that he couldn't ask his questions he would have to pray constantly.  He would sit during an hour long church meeting and pray.  He would finish a prayer look up and look around and then he would pray again, the entire service.  He struggled to eat and drink because he didn't want to put up his middle finger.  I remember him trying to get a drink from his cup using his wrists to pick it up and bring it to his mouth.  He didn't want to wave hello to people or write in class because of the fear that his middle finger would flip someone off.  It was completely debilitating in all aspects of his life. It CONSUMED him.

High functioning Autism can be referred to as an "invisible disability" at times.  People don't know right away that there is something affecting your child.  This has it's pro's and con's.  Well, Jordy's invisible disability was no longer invisible.  Everyone that came in contact knew immediately that he was a little boy that was struggling.  The only word I could use to describe what he was going through was SUFFERING.  I can't count the amount of tears I shed over watching him suffer.  He needed therapy, and help fast, and yet it took weeks, even a few months to get into a therapist that could help him start to heal.

This is how he held his hands all the time:(

When you start therapy for OCD this bad it is a very slow and delicate process.  If you push too hard, too fast it can back fire and make the OCD much worse.  With the correct therapy techniques we started making some progress.  Our therapist was awesome, she helped Jordy realize that it was "OCD bossing him around" and he didn't have to listen to it.  We came up with tools for him to use and key words I could say in response to his unending questions.  We made visuals for him to tape to his desk at school so that his aide, or the kids around him could remind him to use his tools when he starting asking them.  It was a group effort for all our family, friends, church members, and the staff at the school.  I will never forget the day that Jordy talked with our Bishop at church.  Jordy came out of his office with a huge smile on his face.  "Look Mom, he gave me a shiny rock and it says REMEMBER on it.  The Bishop told me that every time I think I need to repent he said I can remember that Bishop Peterson said I don't have to repent all the time."  I started bawling and couldn't even get the words out to thank him properly.  When I told our therapist the story, she started to cry as well.

Watching Jordy suffer with OCD was one of the hardest things I have ever had to deal with as a Mother.  It broke my heart everyday.  I remember the first time we drove home from baseball practice and he went the entire 5 minutes without asking me his questions.  Even better was that he told me about all the things they did in practice that day.  I remember thinking, 'this is the first conversation I have had with him in 3 months'.  It felt like a miracle.  We spent several months doing intense therapy for him.  They even considered putting him in a day program for an option, because he was struggling so much at school.  The school Psychologist said it was the worst case of OCD he had ever seen a child deal with.  Therapy started working and Jordy slowly began to boss back OCD.  We went from 2 therapy appointments a week down to one, and eventually every other week.  It was a process that took us over a year.  As we were driving to his last therapy appointment a couple weeks ago he said to me, "Mom, it just feels so good that I don't feel like I have to repent all the time anymore".  Jordy's therapist gave him a certificate to celebrate his hard work at taking control of his life back.  She is also ready for that call if we need her again.

Who's the Boss?  Jordy is the Boss!!!

OCD is so debilitating at times, and yet can be a powerful tool in people's lives as well.  I am grateful that I have more awareness of when OCD is trying to "boss" my kids around and more tools to help them boss it back!

*These are just my experiences, and I know that everyone has a different view of things.  I am not a therapist, just a Mom that is doing her best to navigate through my children's struggles and triumphs.


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Lessons Learned while Blog Hopping...

I was blog hopping the other night on a couple blogs that are inspirational to me. The first was about a mom trying to figure out a diagnosis for her l year old. She talks about the struggles and blessings that come with raising a special needs child. I found myself really relating to a lot of the things she is going through. The things I have gone through with Cameron are different, but similar in some of the feelings I have gone through. The times you feel sorry for your baby, times of feeling sorry for yourself, and the times you realize the amazing blessings that come from your trial are the same.

From there I clicked on a link for someone else's blog that inspires her. It was about a mom who has 4 children. Three of the four have some sort of special need. From severe things to things like OCD and anxiety. Again I found myself completely relating to her story, her struggles and joys. I have the struggles with Cameron that we have been dealing with the last several months. I also have a son who was diagnosed in the last year as PDD-NOS with extreme sensory processing disorder. He is 8 years old and so fun to be around. He is a challenge and we work hard with tutors, speech therapists, behavioral counselors, and a center designed to help kids that are on the spectrum. We have a great support system in place with him. It is hard work, but we are managing it. I also have a son that has OCD, anxiety, and a pretty good temper. He is mostly managed at this point but we see OCD's ugly head get in the way occasionally. He is aware of it and fights hard not to feed into his OCD thoughts. I still worry about him though. I have 2 sons that at this point don't have any real issues and they keep us together. They are my first and last child from my first marriage. They are both extremely helpful on a daily basis, as are the other kids with struggles. It was just interesting to read about someone in a similar situation.

The last blog I linked to was about learning to live with grief in your life. Her child died a couple of years ago. She has a blog that connects people with all different kinds of loss. On January 22, 2004 my husband was killed instantly in an accident at work. I was 26 years old with 3 little boys. The day after he died I found out I was pregnant with my 4 baby, a son that I named after his dad.

As I sat there reading these blogs and relating to each one that I clicked on I had several thoughts come to mind. The first being how ridiculous it really is that I can relate to so many really sad and difficult trials. Each one of these trials is enough for any one person to handle. In the beginning I was feeling sorry for myself, but at the same time laughing at what a joke it really is. But as I thought more about it I start remembering how many blessings have come about from these trials and also the tender mercies during the trials.

It all started with Jake's death. The first blessing being the news that I was pregnant. Jacob Jr. has been a miracle from the beginning and is an angel that walks this earth. People are drawn to him everywhere he goes. He has been the easiest child to raise. He helped the healing start in all of our hearts when he was born and continues to bring happiness continually. I can't say enough about the blessing of Jacob. There were several more tender mercies to come in the coming months. My house sold, the farm was taken care of, the pregnancy was easy, and I was provided for financially by Jake death benefits. The biggest was my family. They moved in with me until I sold my house, and I moved in with them when it did sell. We were able to live next to each other while I was struggling as a young widow with 4 young children.

A couple years later I met Curtis. Our marriage came with blessings and trials. He also had 4 boys, so when we married we had 8 boys under 8. It was crazy and hard but a lot of fun. If I'm being honest the first 2 years were extraordinarily hard and I wondered if our marriage would last. We worked hard and have an amazing marriage now. Reading the Book of Mormon together quite literally saved our marriage. The last few years have been great and have brought so many blessings. We had Cameron on July 2, 2008. He was sweet, easy and bonded us as a blended family. He is happy all the time. I adore him completely! We moved into a neighborhood that we love. The kids have friends and I have amazing ladies that support me as well.

Last year when my son was struggling in 1st grade I started to notice things that weren't quite right. It took 9 months to get his diagnosis but we still saw blessings through out it. My friend gave me a book called, The Out-of-Sync Child. It changed my life and helped me realize what we were dealing with. I could have written the book. It lead to our finding so many things out with him and started us on the path of really helping him. When he was diagnosed the Doctor found out what elementary school we attend and informed me that we are in one of the top 4 schools in the state that offers services for kids with PDD. I knew that was the reason we felt so strongly about moving here 3 years ago. The school provides speech therapy 2 times a week for 30 min. a social behavior class once a week and his teacher allows him all his OT that helps him concentrate. He chews gum during class, sits on a yoga ball instead of a chair, has a box of food in the room he can eat from anytime he needs to, and runs laps outside when his anxiety gets him acting up a little. It is great! Curtis has been amazing in helping us and thankfully we are in a financial position to afford all the support team we have for him. His tutor has been with us for 2 years. She comes 3 times a week for an hour. She retired last year from teaching and has been substituting for Jordy's teacher when she is gone so that he doesn't have to adjust to new substitutes. I found out recently that she has been volunteering in his class almost everyday and privately helping Jordy get his work done each day. She isn't paid for it and didn't even tell me about it until Jordy mentioned it. When I inquired about it and told her I was concerned that she wasn't being paid for it she responded by saying, "that's not your concern, I enjoy doing it and he is improving so much quicker now. I want to do it." Who does that?!? She is amazing and I know is a huge blessing in our lives to help me get through each day!

In November I found out I was pregnant again. We were a little surprised, but I was very excited. November was when I really started to worry about Cam as well. We got his diagnosis at the beginning of January. I knew that I got pregnant when I did because if we had known about Cameron we would not have had anymore kids. I would have felt like I had more than enough to deal with and we shouldn't be adding stress. I feel strongly this is another one of my biggest blessings. January is always hard for me. The weather is terrible and it's the anniversary of Jake's death. Between the two it is really hard for me to get through. But this year we added Cameron's diagnosis to the stress. On January 19th the 15 year anniversary of Jake and I's first date and 3 days before the 7th anniversary of his death I found out the baby is a girl. Our first girl in 10 kids. I have been praying for a daughter for 14 years. Having a baby girl doesn't make any of my stress go away. It doesn't fix Cam or Jordy's problems. But it adds a spark of excitement that can bring up my spirits when I'm overwhelmed. The timing of it was a huge blessing.

The timing of Cameron's diagnosis was also a blessing. If he had been diagnosed when he was a baby they would have told me that he most likely would be mentally retarded, maybe never walk or talk, and having seizures daily. Well, he is not dealing with any of that except his talking. Also, to be dealing with that and getting Jordy's diagnosis at similar times would have sent me over the edge.

The biggest blessing is my faith and testimony in the Lord Jesus Christ. The healing powers of the Atonement have saved me over and over. My relationship with Heavenly Father gets stronger as I trust in Him and accept His will in my life. I have had many spiritual experiences that have strengthened me through the last 7 years. I know he loves me and helps me through it all.

I hope this doesn't come across as a pity party. It is more of a testimony that even when it's tough there are good things happening all the time that help us get through the tough times. There are numerous more tender mercies over the years but I have to go to bed sometime, I have a busy day tomorrow!