A Cookie Cutter Christmas…

I recently received an email from a mother who just received a diagnosis of Autism for her son.  She told me she didn’t have any support from her family but was trying to stay hopeful and was working hard to begin new therapies.  I also received a letter from a mother of two boys with Autism.  She told me about their struggles and that one of her boys was struggling and lived in a residential facility.  The struggles of raising children often come and go, but raising children with special needs can be extremely overwhelming.
Our intense struggles with Justin from earlier this year have subsided and we are calmly riding our roller coaster ride of Autism—and we are well!!  I love my family and for 6 out of 7 days, my life is adjusted in a way that I think we are pretty normal!!  We are happy!! We adjust our goals often and try to stay focused on the positive.  So why is it only 6 out of 7??  There is one day a week that always makes me feel like our family is not normal—and that is on Sundays.  It is the one day a week I feel a divide in our family.  At this point, Justin drops to the floor when we go into church, refusing to move until he bolts to the cultural hall to run around and stare at the lights.  My other two toddlers run after him, or the other direction and very quickly we start to unravel at the seams!!  It is in these moments, where I am trying so hard to stay positive that a voice in my head frantically says, “This isn’t working, there is no place for your family here—this is not normal.”  I share this not as a complaint against any of the wonderful people in our church family—it is just the one day a week that I feel like my testimony of my family and my testimony of attending church meetings don’t correlate!!
I recently shared my feelings about this with my sister-in-law after I had gone to a church Christmas party.  My husband stayed home with 3 out of our 4 kids and I had a great time saying hello to my friends who are like family to me.  But as I watched beautifully made videos of families together at Christmas enjoying traditions—all I could think of is how different it is for my family.  I came home to my sweet family and was reminded how much I adore them—with all our differences.  But the next day I had to vent to my sister-in-law about my insecurities.  She said, “Shannon, you love your family and are happy.  Don’t get caught up in wanting a cookie cutter family—this is how your cookie has been cut, and it is wonderful.”  I started laughing because she was so right!!
As all of us adjust our cookie cutter dreams and expectations may we realize how truly blessed we are just to be children of a Heavenly Father who loves us.  He loved us enough to send his only begotten Son to die for our sins so that we can live again with Him.
My favorite talk about clinging to hope is by Elder Jeffrey R. Holland, an Apostle in our Church.  You may link to the whole talk here.  He talks about faith and says:
When problems come and questions arise, do not start your quest for faith by saying how much you do not have, leading as it were with your “unbelief.” That is like trying to stuff a turkey through the beak! Let me be clear on this point: I am not asking you to pretend to faith you do not have. I am asking you to be true to the faith you do have. Sometimes we act as if an honest declaration of doubt is a higher manifestation of moral courage than is an honest declaration of faith. It is not! So let us all remember the clear message of this scriptural account: Be as candid about your questions as you need to be; life is full of them on one subject or another. But if you and your family want to be healed, don’t let those questions stand in the way of faith working its miracle.
I love my family, and I love my life and the opportunities I have to see beauty and joy in the smallest triumphs!!  Watching my kids overcome trials is such a strength to me of the great courage and faith we all can draw upon to keep enduring and pursue our goals of happiness.  I hope you all have a Merry Christmas and a Happy New Year!!  This picture is from 2 years ago—but it is one of my favorite pictures of my cookie cutter family!!
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Tears of Joy…Justin is starting to talk

Hard to believe that just 5 months ago we were headed to an Autism specialist 17 hours away by car with only a thread of hope to hold on to.  We were blessed to get a diagnosis of PANDAS, which we had never heard of before, and have been treating him ever since.  And here’s a look at my little charmer now…
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He is doing so well now.  We aren’t having any head-banging, biting, or screaming fits like he was before.  He is back to himself and doing so well in his ABA therapy.
We have been working on “Yes” and “No” with Justin and trying to get him to understand what they mean and use them appropriately.  He has been saying them in answer to questions for a few months now but just in the last few weeks we started to notice that he was using them accurately almost all the time!!  And he is answering “Yes” and “No” questions without us prompting him!!
And then about a week ago, we started to get spontaneous sentences from him.  Just to be clear—he has said sentences with prompting before, or talked with his iPad, but he is now getting our attention and then requesting things with a full sentence—ON HIS OWN!!!  My little man just started talking!!  My husband was trying to put him to bed the other night and he walked past him to go downstairs and when asked where he was going, he stopped and said, “I GO DOWNSTAIRS!!”  We couldn’t believe it!!  And then the sweetest blessing came last night when he looked at my husband and said, “DAD-DY, I WANT PHONE PLEASE.”  This was the first time he has said Daddy on his own!!  There were tears—tears of great joy.
We have been waiting for this answer to prayer for 9 years!!  Doctors said it wouldn’t ever come, and others said the costly ABA therapy wasn’t worth it.  And after years of Speech therapy, ABA, and many tears—my son is able to talk to us.  I am so grateful for the many people who have been put in our path to help Justin along his journey with Autism.  Every single one of them has helped in some way to get him to where he is right now.  And to the 5 angels who work on his ABA Team right now—Thank you for never giving up, giving us hope, and helping see this dream come true.  To all our family and friends—thank you for your prayers, fasting, and endless words of encouragement.
If you are in a dark place, for whatever reason—hold on to that hope that things will get better.  One of the leaders in my church spoke about this in the April LDS General Conference 2013, Elder Dieter F. Uchtdorf said:
“Yes, from time to time our lives may seem to be touched by, or even wrapped in, darkness. Sometimes the night that surrounds us will appear oppressive, disheartening, and frightening.

My heart grieves for the many sorrows some of you face, for the painful loneliness and wearisome fears you may be experiencing.

Nevertheless, I bear witness that our living hope is in Christ Jesus! He is the true, pure, and powerful entrance to divine enlightenment.

I testify that with Christ, darkness cannot succeed. Darkness will not gain victory over the light of Christ.”
I know that is true.  One of my favorite songs is Endless Nights from The Lion King.  Simba sings it when he feels lost and overwhelmed by darkness and doesn’t know what to do.  The lyrics of this song have echoed through me during many trials in my life…
Where has the starlight gone?
Dark is the day
How can I find my way home?

Home is an empty dream
Lost to the night
Father, I feel so alone

You promised you’d be there
Whenever I needed you
Whenever I call your name
You’re not anywhere

I’m trying to hold on
Just waiting to hear your voice
One word, just a word will do
To end this nightmare

When will the dawning break
Oh endless night
Sleepless I dream of the day

When you were by my side
Guiding my path
Father, I can’t find the way

You promised you’d be there
Whenever I needed you
Whenever I call your name
You’re not anywhere

I’m trying to hold on
Just waiting to hear your voice
One word, just a word will do
To end this nightmare

I know that the night must end
And that the sun will rise
And that the sun will rise

I know that the clouds must clear
And that the sun will shine
And that the sun will shine

I know
Yes, I know
The sun will rise
Yes, I know
I know
The clouds must clear

I know that the night must end
I know that the sun will rise
And I’ll hear your voice deep inside

I know that the night must end
And that the clouds must clear
The sun
The sun will rise
The sun
The sun will rise

I couldn’t help but think of this song today as Justin called me Mommy tonight.  Yep, I asked him, “Who am I, Justin?”  And after repeating me twice he smiled and said, “DADDY” and then doubled over laughing hysterically.  He is even teasing us now!!  I asked him again and he smiled and said “MOM-MY” and gave me a hug and a kiss goodnight. 

Justin’s part in the Primary Program…

Our church has one Sunday a year where the kids are the focus of the congregation’s main meeting, Sacrament meeting.  It is called the Primary Program and it is always full of tender testimonies and beautiful children’s singing and a few spontaneous kid funnies.  I have looked forward to this meeting every year, even when I was a kid!
Right after Justin got his diagnosis of Autism, when he was almost 4 years old, we moved to a new state in search of better services for him and a better lifestyle for our little family.  I remember sitting close to the front row for the Primary Program that year, very excited to hear all the children….and then I looked at one of the mom’s faces as she smiled proudly as her son bravely walked to the pulpit in front of the congregation and said his part.  Her tender smile was so touching and then my heart sank as I wondered what our future with Justin would hold, and whether he would ever be able to participate in the Primary Program….or any other things I had dreamed about.  I sat for the rest of the meeting paralyzed with my worries and fears and with tears streaming down my face.  I felt so scared and alone in our journey with Justin and Autism.
Now fast forward 6 years to today.  This is not a story of full recovery from Autism or a miracle of Justin speaking spontaneously, but it is the sweetest miracle story I know!!  It didn’t start out to be a good day, by any means.  Justin woke up mad and had several meltdowns all morning.  He tried to undo my husband’s white church shirt which we thought was most certainly a sign that he wanted him to change his clothes and not go take him to church today!!  We took all the kids to church anyway and Justin went in to the building, and promptly had a pretty severe meltdown.  He started taking off his own clothes(we should have put him in more comfy clothes today—our bad!!) in the foyer and my husband and I looked at each other and agreed—the Primary Program wasn’t happening for him today, and that was okay!! 
He had made it through two practices already.  And I am always in awe at the spirit of love I can feel from all the kids in Primary and their leaders when Justin is around.  At one of the practices, they waited for him to come in from the hallway and when he entered the room and walked up to the pulpit—there was complete silence.  Not an awkward silence, but the silence of anticipation of something great.  I felt like every kid was holding their breath and thinking, “You can do it Justin!”  That triumphant, supportive spirit is something I know that Justin can feel.  And my husband prompted him word for word through his part.  And as soon as he finished, everyone sighed with a smile of pride—their Justin did it!!
Once we realized Justin wasn’t going to make it, my husband took him to the car to watch a movie while I stayed to hear my daughter.  Justin had the first line of the program, and as the time got closer I decided to go to the car and see if he wanted to give it a try.  My husband told me he had already tried to bring him back into the building, and he melted again!!  I got his attention and asked him if he wanted to say his part in the microphone.  He looked at me and said, “Yes.”  So we decided it wouldn’t hurt to try it again.  We anxiously waited outside the chapel doors and then as soon as all the other Primary children were seated we motioned for Justin to come to the doors.  He ran the other direction and squealed.  My husband went over and picked him up and he started laughing.  That’s when we knew this might actually work out.  He carried him through the doors to the chapel and directly onto the stand and then he walked up to the pulpit and being prompted by my husband word for word said his part into the microphone, “I-KNOW-THAT-I-AM-A-CHILD-OF-GOD.”  And then he smiled, and walked out of the chapel.
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He didn’t smile for a picture because he was too busy eating his Swedish Fish as a reward—he deserved it!! 
I am always so proud of Justin for how hard he tries every day to combat so many obstacles that challenge him. He is such a great example to me and shows me such great determination.  I know that he knows he is a child of God.  He is not any less of a child of God than anyone else on this Earth.  It is such a simple phrase, but it completely puts into perspective why we are here in this life and reminds me that our day-to-day challenges are so temporal.  I am so grateful for that pristine moment of clarity today from hearing Justin’s testimony. I love you with all my heart buddy!!

DIY Chalkboard with Hobby Lobby open frame…

I often look in my rear view mirror and see four little faces in the car and think, “I HAVE FOUR KIDS!!”  I am the busiest I have ever been—but I can’t think of anything else I would rather be busy doing!!  That being said, I have so many different places to be during the week that I sometimes feel like I don’t know whether I am coming or going!!  And then I saw it….a beautiful, scalloped open frame at Hobby Lobby.  It hit me that I could get some chalkboard paint, paint the wall in my eat in kitchen and frame it!!  They had chalkboard paint right next to the acrylic paint at Hobby Lobby.   I love the way it turned out!! 
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It usually has a scripture of the week across the top, and Monday –Saturday columns with all the million places and appointments I need to remember.  It saves me brain power on trying to remember everything going on in my life.  And if that isn’t enough reason to love this thing—dressing up the board for birthdays and holidays certainly is. 
My other favorite part of this board is that it is right next to the dinner table which makes it easy to focus on where everyone is headed during the week and how we can help each other with our family and personal goals.  We get to catch up on what everyone is doing at dinner time together! 
This school year has been different than any year for us because I don’t have any kids in school!!  Justin is taking a break from school to focus on healing from PANDAS(which is going really well!!), and this is our first year homeschooling Little Miss.  I have to say, I love homeschooling—it has been so rewarding!  I wasn’t going to give up my ceremonial First Day of School pictures—so I got some of all my kiddos.  They turned out so fun using the chalkboard for the background!! Look at this picture of my sweet Justin—see that smile??  Yep, we have been seeing a ton of smiles from him lately—which make me smile more too!!  And he has learned how to pose for pictures!!
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I wrote down each of my kids’ names, and grades and listed three of their personality traits that are their strengths and then included a few things they love at their ages.  It reminds me of what sweet kids I have and how all their strengths are needed in our family—I feel so blessed to have these kids making me smile everyday.

Cub Scout Triathlon…

It’s Saturday, and I am sitting in my family room, and there is a peaceful quiet hum of children playing…and my eyes are welling up with tears.  With two kids under 3 1/2, and a son with Autism who loves vocal stimming and loud squeals—there aren’t too many moments in our house that everyone is content.  But this morning, everyone has been happy!!
Actually, we had the greatest morning ever!!  Justin’s Cub Scout Pack planned a triathlon in a neighborhood for the boys to participate in.  We have missed a lot of scouting this year, but Justin has been doing so well lately and so we took the whole family and went to cheer on Justin.
They started with swimming, which I knew Justin would like because he loves being in the water.
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The second leg was three laps on a bike.  Justin doesn’t ride a bike often—it has been a year since he has been on it because the training wheels broke!!  But he got on without any whining and took off for his laps.
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I knew Justin would only attempt one lap, and I was just praying he would make it without having a melt down.  Especially since we hadn’t been practicing riding the bike at all!!  So the kids and I stayed back and waited for him….and I nervously prayed that he could be happy and enjoy the ride with his dad!!  My best friend texted me right as I was worrying:  “Just saw Justin!!!  Way to go Justin!!  They are doing awesome!!!”  That meant he made it have way around the loop!!
And then we saw him.  I am that crazy lady who cries at the Olympics, and The Biggest Loser, and Little League….yep, that’s me!!  I purposefully wore my sunglasses today so I could cry to my little heart’s content without anyone noticing—ha ha!!
And the cheers began…
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He had the cutest little sheepish smile on his face when he rode past all the parents and kids cheering for him!!  Several parents came up and commented on how happy he looked!!
The last leg was running, but Justin was done and wanted to swim.  So he finished up in the pool!  We left without any of our kids having a tantrum—I can’t remember ever having such a perfect Saturday morning!! In the voice of Rapunzel from Tangled, “Best. Day. Ever!!
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Happy Father’s Day…from the Webelos

I know I am a little late in posting this, but it had to be shared!!  Justin hasn’t been able to go to Scouts in the last 4 months.  Half that time he was having meltdowns, and the other times my husband was out of town.  So Justin missed making the Father’s Day gift.
My husband didn’t even get to go to church on Father’s Day—he had to take care of Justin.  Imagine my surprise when the Webelos leader came up to me and handed me this…
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The card says, “The Webelos made the pencil holder for Justin.  It was a gesture to help him make it for you.  We all love Justin and we also think you are a wonderful Dad. Happy Father’s Day.”
I cried. Big surprise, I know—but seriously, how thoughtful is that!!  Not only did the Webelos leaders think of Justin and his dad, but the Webelos were taught compassion that night–and how to show empathy.  Something they are VERY good at already, but it was still a remarkable life lesson.  They not only thought about Justin not being there, but the impact of Justin not being able to tell his dad how wonderful he is.  Those are words that as Justin’s parents we don’t get to hear.  It was a small thought that had a huge impact on me, and I’m sure the boys as well.  Another great Autism and scouting experience!!

Grieving the loss of dreams…and finding new ones!!

When my husband and I were pregnant for the second time, we went in for an ultrasound and found out we had lost the baby.  We didn’t have any kids yet, and had already miscarried once before.  I was heartbroken.  I went to my doctor’s office straight from the hospital where the ultrasound was taken and she came in and handed me a flyer advertising a miscarriage support group.  At the time,  I could’ve cared less about the flyer!!  But I took it anyway and put it on my desk when I got home and didn’t think about it for weeks.  After I had miscarried, I eventually found the flyer and started reading it.  It had the Kübler-Ross model of the five stages of grieving on it with examples of feelings for each stage.
Denial—this isn’t really happening.
Anger—why would this happen to me?
Bargaining—I will do anything to make this go away.
Depression—this is terrible, why even try?
Acceptance—it’s going to be okay.
I was surprised when I read these stages how applicable they were to the wide range of emotions I had been feeling during my miscarriage.  It made my grieving process real for me, and gave me hope that maybe what I was feeling was normal and part of a coping process that would truly end up with acceptance and some sort of ability to move on. 
I know not everyone experiences every step of these grieving stages, but as my husband and I have processed the diagnosis of Autism for Justin—we have definitely spent time in each stage.  I have friends who say to me, “Wow, you handle this Autism thing so well!”  And I immediately have a flashback to when Justin was 3 years old and I cried every day and had absolutely no hope for our future.  I was so depressed and really couldn’t see how having a child struggling with Autism could every bring any kind of joy or happiness for him, or our family!  I found myself making mental checklists of all the things I wouldn’t get to see him accomplish if this were as bad as it seemed to be back then.  And I would just sit and cry, and then be angry, and then cry some more.  Was I having an attitude of gratitude at that time??  No, and I felt so guilty about that then…but now when I look back at that time frame, I am so proud that even though I felt no hope, and perhaps no amount of gratitude for the other blessings in my life—I just kept moving forward.
We were living in Germany when I just started to wonder if Justin had Autism.  I had a very sweet friend who had a son Justin’s age and she came over for a playdate one day.  We were talking about our kids and things they were doing and she matter of factly said, “yeah, I think my son might have Autism.”  I just stared at here.  Her beautiful, happy face—and thought, “How can you be okay with this, and you even look happy too!?!”  She left and I couldn’t get her out of my mind all day.  Why couldn’t I accept that Justin may have Autism?  I was just so terrified that our life was falling apart at the seams.  The future seemed so unknown and out of control!  I didn’t understand how she did it—but she was my mentor and I kept her in my mind as a great example—perplexing as it was to me, I kept thinking, “I have to figure out why she can be okay with this, because I want so desperately to be okay with this!”  And as I slowly got more information about Autism, and finally at the age of 4 a diagnosis—as hard as it was that day to hear the doctor say he knew Justin had Autism, I started to feel better about Autism.  And then we found out about ABA, and all of a sudden I got some hope back in my life and started to be proactive and felt like I had control over helping him.  I remember the first time he said, “Buh!” during ABA.  It had taken weeks, but he finally said it after he was asked to repeat that sound.  I finally felt joy again!  And then I pictured my friend from Germany and thought, “Now I get it, I am getting there!!”  Getting through the denial, anger, bargaining, and depression was a rough 2 years for me—but it is so nice to be on the other side of that now and experience all the joys of being proactive!
No matter how different our trials are in this life, we all have dreams that are unfulfilled.  It’s a topic that a lot of people are uncomfortable acknowledging because it carries a tone of ungraciousness to say, “I am so mad because I didn’t get what I wanted!”  I don’t think we need to feel guilty about being sad, or mad.  There will always be opposition in all things and feeling pain helps us appreciate the joy when it comes.  And moving on from that angry stage though can bring about the greatest joy and acceptance of all the other blessings we have in our lives.
One of my favorite quotes that inspires me when times get tough is from Elder Jeffrey R. Holland.  He tells a story of how years earlier, he was driving his young family to move across the country and his car broke down twice, in the same spot!! (Here is a link to the video of this story)  He drove by that same spot in his older age and said he could almost see that same scene in his mind of a young, worried father walking to a nearby town to get help and leaving his wife and two kids in the car. He says:
In that imaginary instant, I couldn’t help calling out to him: “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead.” Some blessings come soon, some come late, and some don’t come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be all right in the end. Trust God and believe in good things to come.
My husband, and my friend who was also my mentor, and several others were that encouraging voice to me back in that dark time frame while living in Germany.  I didn’t feel anything, I was so numb and sad—but I knew I could trust them and we have had so much joy since those dark days!!  And yes, there are bad days that still come up—this year we’ve had a truckload of them!!  But somehow it really does all work out!!
I love Justin so much.  My husband and I were talking about how having a child with Autism is sometimes like having a child permanently in the toddler stage—there is a lot of mischievousness that goes on with Justin!!  But that toddler stage is also so rewarding when you acknowledge every little bit of progress as a victory!! And Justin is always learning new things one step at a time!! I love watching Justin’s spirit of determination to express what he wants—it is one of his strengths.  So is his charming smile, which he uses often to get out of trouble for doing things like this…
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Look at that smile!!  We have started to do some projects around the house and had black paint for the doors and white paint for the trim…and Justin decided to “help out!”  HA!! It all got fixed and we couldn’t stop laughing about it:) I love you, my sweet, charming boy!!

Finding answers for Justin…

I received an overwhelming amount of love and support from my last post about Justin and the struggles we have had for the past 5 months.  So many readers emailed me and gave suggestions and I can’t tell you how humbled and thankful I am to know that there are so many compassionate people in the world!  To know that others care and are praying for our family means the world to me and it has fueled me to keep up our battle in fighting these aggressive symptoms of Autism. 
As I was following leads to doctors and clinics and pursuing tests, it seemed as though nothing was “feeling” right.  I didn’t know what to do.  I just kept praying and following leads but I wasn’t feeling any clear inspiration one direction or the other.

Here’s the big question that I want to take a minute to clarify, because it is a great question that many of my friends asked me when they heard that Justin was struggling so much.  “Aren’t there doctors who treat Autism, like specialists??”  And here is my answer for you—“No, there is not a specific field of specialty in the MD world for treating Autism.”  There is a field that specializes in diagnosing Autism, Developmental and Behavioral Pediatrics, but they don’t treat Autism.  And just in case you think that must be because I live somewhere rural enough that there aren’t enough qualified specialists….I called one of the top ranking children’s hospitals in the country and tried to set up an appointment for Justin, at their Autism Center, and she told me they didn’t have a child Psychiatrist who specialized in Autism—so I left a message and they consulted with nurses and their group and called me back to tell me that they really only diagnose Autism and that wouldn’t be much help to me for treatment…..AGREED!!  
This is so disturbing to me—not only because my son is falling apart, but because there are 1 in 50 kids being diagnosed with Autism and yet there isn’t a medical school in this country that is specializing in how to treat it!!  It would be like going to the doctor to be diagnosed for pneumonia, but then turned away and being told, “I hope you can figure out a good treatment option—there are many out there, so be careful in how you choose your treatment!!  Some work and some don’t!”  That is the reality of having a child with Autism.  And if I had time to be disturbed about this or change the world, I would….but I have to let all that go and just focus on finding solutions for Justin right now.
After many horrific days of not feeling direction, and still continuing to watch my child bite himself, and wrestle and bite me, I had an inspired thought to email a friend of mine who has a son with Autism and ask who her doctor was.  She replied the same night and explained that they went to a doctor over 1,000 miles away, but that they had felt very happy with their experience there and that they were experts in treating Autism.  It was the first time in months I actually felt inspired and told my husband we needed to get an appointment ASAP. We called the next day and were able to get an appointment two weeks later!! 
Not even the fear of being cooped up in the car with Justin screaming for a 17 hour drive could overshadow the inspiration I felt that we really needed to get to this specific clinic.  So my parents flew out to take care of my other three kids and off we went!
We sent a lot of our medical records to the doctor’s office and had several intake phone calls before we arrived and they were very thorough in investigating what was going on with Justin.  Within the first 5-10 minutes of our visit, the doctor asked us if we had heard of PANDAS (Pediatric Autoimmune Illness Associated with Streptococci).  I hadn’t ever heard of it.  As he began to explain some of the symptoms(irritability or aggression, extreme OCD, urinary frequency, personality change, sensory sensitivities, tics or abnormal movements, inability to concentrate)  I knew we had finally found our answer.  I felt an enormous wave of spiritual confirmation, “this is what he has.”  I was kind of stunned as I sat there listening to him.  My mind was back-tracking to the past 4 months and all the struggles and resistance from professionals and even some family members we had to pursue a different course for Justin, but we kept moving forward and followed the inspiration we felt and we were completely led to our answer.  The doctor kept talking and we had a thorough appointment lasting about 1 hour and 45 minutes…but all I remember is the first 10 minutes, and the most amazing testimony of how much our Father in Heaven loved my sweet Justin, and how much he must have loved me too—to answer my pleas to find out why he was struggling so much!!
When I was younger, my Sunday School teacher had us memorize three scripture verses from Alma 37:35-37.  Alma was a prophet in the Book of Mormon and in teaching his sons he said:
35 O, remember, my son, and learn wisdom in thy youth; yea, learn in thy youth to keep the commandments of God.

36 Yea, and cry unto God for all thy support; yea, let all thy doings be unto the Lord, and whithersoever thou goest let it be in the Lord; yea, let all thy thoughts be directed unto the Lord; yea, let the affections of thy heart be placed upon the Lord forever.

37 Counsel with the Lord in all thy doings, and he will direct thee for good; yea, when thou liest down at night lie down unto the Lord, that he may watch over you in your sleep; and when thou risest in the morning let thy heart be full of thanks unto God; and if ye do these things, ye shall be lifted up at the last day.

The words, “Counsel with the Lord in all thy doings, and he will direct thee for good,” run through my head often and have pushed me to continue  keep praying these past five months.  They have truly been some of the most heart-breaking months of my life.  And at times when I thought I had nothing left, I had the most wonderful friends and a few family members who faithfully stuck by my side and carried me through.  I know that these verses of scriptures are true, and that even though my direction took some time to figure out—we still received direction.

The treatment for PANDAS is primarily a few months of antibiotics and we have already seen some improvement.  We are still fighting this stuff, but at least we finally know what we are fighting!!

Oh yeah, and the 17 hour car ride home….well, let’s just say it’s a good thing we were still on somewhat of a spiritual high from the appointment because it was R-O-U-G-H!!  I may have cried and told my husband to just let me walk the last 8 hours by myself…..and I meant it!!  But we made it home, because of this guy…(My talented friend, Sanae James took this beautiful photo!)

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My sweet husband drove through the night—24 hours straight with Justin screaming for the first 10 hours of that, to get us home!!  He just keeps on going, which is why I love him so much.  And I’m grateful he ignored my falling apart and hysteria and just kept telling me “we’re going to make it!” 

Thank you again, to everyone who has prayed and sent us encouraging words—it has truly kept us going!! And we have literally felt the strength and power of prayer.

The Ugliness of Uncertainty…going through a rough patch with Justin

I love posting about Justin’s successes!  It helps me stay focused on the positive things in life and reminds me how blessed I am.  Most days I don’t have to look far to find something new and amazing that Justin has learned.  But there are certainly times where things are “that bad” that it seems impossible to find a silver lining…so there is your warning, this is not going to be a warm and fuzzy post about Autism successes. 
Things have been rough….really rough…pits-of-despair-unbearable-rough for the past couple of months.  My way of coping with rough times is to talk about it with friends and family.  That’s how I get through it.  I have decided to share the details of the past few months with my readers for a couple of reasons.  My first reason is in case any other mom is going through this–we can bear our burdens together and not feel so alone.  Second, because whether you have a child with Autism or not, we all have super low times where we feel hopeless and I may just need to rely on your strength right now to get me through–and hopefully I can return the favor some day.  And lastly, because I know that somehow, this will all work out and I’ll be able to look back at this post and recognize how God guided my family or others to help us make it through this—that will be another strength to rely upon for trials that will come in the future.
Justin started to have a distended belly back in February and kept pushing on his abdomen and making a coughing-type noise.  He would cry out sometimes, but we couldn’t tell whether it correlated directly with pushing on his stomach.  We took him to the doctor and they examined him and couldn’t find anything wrong. Daily bathroom habits were normal, so we didn’t know why he was doing this behavior but originally decided to chalk it up to an unusual repetitive behavior.  Then he started to scream and tantrum more and hit his hips and head with his hands.  He is never self-injurious unless he is in pain, and we had only ever seen this head hitting behavior 2 other times in the past 10 years.  So we interpreted his behavior to mean that he was in some type of physical pain.  We took him back to the doctor and started our game of “Let’s just rule stuff out,” which is all we can do since Justin can’t tell us if he is hurting.  We had an abdominal series of x-rays and it turned out he had a significant, partial bowel obstruction.  We put him on a weekend diet of 2 doses a day of Miralax and the head hitting and hip hitting stopped and the orneriness decreased.  Phew!!
But after a few days, we hadn’t seen a huge decrease in the orneriness.  We actually noticed it was getting worse, so we took him back to the doctor and found out he had an ear infection.  We blamed all his orneriness on the new ear infection and waited for things to get better.  But he kept hitting his head and increased his screaming fits and drop-to-the-floor tantrums. After 10 days of that, we took him back to the doctor to re-check ears, and did a repeat abdominal x-ray….partial obstruction again—or perhaps it was never fully resolved the first time.  We had to put him on a clear liquid, Miralax only diet for 36 hours.  It was AWFULl!!  He begged for food using his iPad the entire time and would pull on my arms and scream at me and then run to his iPad and push the icon for Nachos.  When I wouldn’t give it to him he would go back to his iPad, scream, and spell slowly N-A-C-H-O-s.  We have spent years teaching Justin this method of communication, and now I had to repeatedly tell him no.  It was so sad!!  At the end of 24 hours, he started vomiting and ended up with a fever of 102!!  We took him back to the doctor the next morning and they did an x-ray and said the bowel obstruction had been cleared.  Back to a soft diet and just a daily dose or Miralax for a month to get back on track.  Yay, we were finally going to see relief!!
But we didn’t.  We also took him to the dentist to rule out any problems—no problems there.  We wondered if he had a sinus infection, and he was put on an antibiotic.  For 3 days he was completely back to normal, no behaviors or fits—it was like we had our sweet Justin back!!  And then, even though we had continued the rest of the antibiotic course, the head banging and fits came back.  We had a sedated CT scan of his head and abdomen and all of that came back normal except for some enlarged lymph nodes around the stomach.  A follow up ultrasound proved that they were no longer enlarged and all his abdominal organs were normal.
And just to complicate things, Justin’s doctor had started him on Abilify.  My sweet boy was all of a sudden not only hitting his head, but biting his arm and starting to shove me.  We never see aggression from Justin so this was all so alarming.  The intensity and anger became very worrisome for us.  He also started having multiple urinary accidents during the day and then he started ear flapping.  He would fall asleep after his screaming fits and head banging, so we wondered whether he was actually starting to have temporal lobe seizures.  We took him AGAIN to his doctor who agreed that they sounded like seizures and put him on Topamax.  The next day he got mad and bit ME and then started having bowel movements in his bed.  This is where mom starts falling apart.  After eight weeks of managing screaming and the uncertainty of where this pain is coming from, and watching my child hurt himself–we were now adding un-potty-trained to the list!! And then he wrestled me one morning and tried to pin be against the pantry door….and this is where we officially hit rock bottom.  Nothing like grabbing my other kids and locking them in a room to keep them safe while I try to calm down the unexplained anger of their brother.  These are my greatest fears as a mom, and as much as I am a talker–I reached a point where this was so ugly I didn’t want to talk about it at allI just wanted it to stop.  I cried—and cried–and then I cried some more.  And then I did call his therapists and my family and friends and got back into the game and started searching for help again.
I have been through some rough times in my life, but this surely comes close to the top of the list.  I can’t describe how incredibly heartbreaking it is to watch your child hurt themselves and then couple that with the uncertainty of not knowing why…I have just been hanging on with the hope that we can somehow be inspired how to help Justin.  I have had family and friends fasting and praying for us and we are completely relying on that strength to get us through right now.
We have taken him off the Abilify and Topamax, and are treating him with an antibiotic to see if his symptoms subside again.
Have we seen specialists??  Yes, and so far it hasn’t proved to be helpful.  We are open to new specialists if any of my readers have recommendations!!  We will travel if necessary at this point, I just can’t bear to see Justin suffer like this.  Is Autism rough??  Yes!!  Does it mean your life goals will be altered??  Absolutely!!  And I am okay with all that, but watching him in pain and dealing with constant uncertainty of what is causing the pain—is just not right!! 
During all this insanity, I got Justin’s school pictures back from this year (the first time ever I have had a school picture of him—HOORAY!!.)
B - Justin

And this beautiful smile is the whole reason I am fighting—I am not looking for a cure for Autism, I just want Justin to be out of pain and smile like this again.

DIY Angry Birds Catapult….Life Size!!

After we had our son, Justin’s Angry Birds Birthday party, and posted the pictures of our life-sized catapult on Pinterest—we have had a lot of people ask how my husband made this, and the dimensions.
DSC_0574
So, FINALLY, here’s the dimensions!!
catapult
My husband used 5, 46″ 2X4’s for the 2 base legs and 3 cross bars (2 along the base and 1 across the bottom opening of the sling shot.)  The two vertical posts are 60″ 2X4’s.  Then for the 2 angled boards he cut both of them at a 45 degree and hey ended up being approximately 33”.  He used exercise elastic bands from a sports store and tied them to large eyelets, and then fastened them to a colander.
We have used this for scouting events, and neighborhood parties like our neighborhood Easter Egg hunt—and everybody loves it!!