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!!

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…

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.

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!! 

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!!

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.

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.

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…

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!!

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…

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…

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!)

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 all!  I 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!!.)

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.

So, FINALLY, here’s the dimensions!!

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!! 

 

Disneyworld and Autism…our roller coaster ride...

My parents took our family to Disneyworld this year and it was a well needed break for us!!  We had many highlights, like finding out Justin LOVES roller coasters!!  And I mean love!!  He would bolt to get in line to go again and we had to keep a close eye on him to catch up!!

But we also had some serious lows on the trip.  We are well accustomed to altering our expectations on vacations or any other outings, and so we usually expect nothing and celebrate any small success—even if it means we only stay at the park for a couple of hours, or even minutes!!  If they were good minutes, then we are happy!!  But Justin was just “off” this trip, and it didn’t seem to be triggered by change of scenery or schedule.  Those things CAN be a trigger, but he was crying like he was in pain when we got to Florida—and it just seemed different.

Justin did great the first day, and then woke up sobbing the second day.  So my dad stayed at the hotel with him while the rest of us went to Disneyworld.  Thanks Dad!!  I hate separating my family, but it helps Justin and everyone else to give him some space and just take it easy sometimes.

We called my dad around lunch time and Justin was doing better so he decided to bring him to the park and meet up with us.  My dad rented a double stroller for Justin so that he would have a “safe place” from all the crowds and a resting place from walking and transitioning.

Justin was doing well, so we started going on rides. We love the Special Accommodation pass that Disney has for children with Autism, what an awesome idea to help families accommodate for long lines!!   It was working perfectly,, so we just kept hitting the rides.  At some point, some of the kids needed a potty break, and the others needed food and somehow Justin and I accidentally got split up from everyone else—without my purse, or my CELL PHONE!!!  And then Justin started to whine and I could tell there was a meltdown brewing!!  Yep, just me and Mr. Justin—in a sea of a million people and no way to reunite with my troops!!  We went on the Winnie the Pooh ride, and then paced looking for family—which can only last as long as I am pacing “correctly” for Justin, which I evidently was not doing correctly enough because he started grabbing me and trying to turn me to walk a certain path.  Luckily, I coaxed him into sitting on a bench.  A sweet mom with 4 kids came and sat next to me, and there wasn’t enough room for her kids.  I looked at her and with a nervous voice said, “I am sorry I can’t ask him to move over for you guys, he has autism and that might set him off and my family left me without a cell phone and I am sweating bullets because he is just about to have a meltdown!!”  Have I mentioned that I talk A LOT when I am nervous??  I am surprised she didn’t get the whole family history from me…  She handed me her cell phone to use—hooray for nice people in the world!!  And right at that point Justin lost it and started pulling out of my hand grasp…I just managed to quickly blurt out at my dad on the other end of the cell phone to come quickly back to the Winnie the Pooh ride!!  Note to self—NEVER leave cell phone behind!!

We did meet up with everyone else and were able to go on several other rides and have a good time.  The best experience of the day, by far, was BIG THUNDER MOUNTAIN!!

It has always been my favorite ride, and now it is Justin’s too!!  My husband and I took him on the ride together and captured this sweet picture!!  He was grinning from ear to ear the ENTIRE ride!!  We laughed and squealed and it was honestly, a little piece of heaven!!

My parents took Justin and Little Miss to go ride the carousel while my husband and I took care of another family emergency—my baby girl decided to have the worst diaper blow out ever, right in the middle of the park—and we had nothing to clean it up, no extra clothes, no diaper wipes!!  Good times!!  And in the midst of cleaning up that disaster, I got a phone call from my mom that Justin was in a store having a meltdown and wouldn’t get up off the floor.  Oh no!!  I started running to meet her and help and my husband was trying to catch up behind us with the double stroller.  I finally reach the carousel and I can hear Justin screaming but I can’t find him.  I rushed towards the noise and found him in a store with my dad and a sweet friend of ours, frantically unwrapping suckers trying to calm him down.  Our friend had brought the double stroller into the store to try and talk him into sitting and calming down.  He finally sat down, still whining and screaming, and we were able to wheel him out of the store.  My husband and I knew that we had reached that  point where we were now treading on Autism’s “thin ice” and we needed to get out of the park quickly!!

By this point, it was dark and the firework show was about to start.  We knew we needed to get out to the monorail before we got caught in any crowds or lines for the monorail!!  We rushed back to the front of the park, weaving the strollers in and out of people and then as soon as my husband returned the rented stroller….Major meltdown began!!  Justin laid down on the sidewalk and started screaming as loud as he could and when my husband tried to pick him up he just went spaghetti and started wailing louder.   He refused a piggy back ride, which usually helps in these situations.  Not this time—he didn’t care.  My husband rushed him out of the park gates and Justin was hysterical at that point.  I made him stop outside and try to “work through it” instead of picking him up and carrying him, only because I have watched our therapists do this with Justin because they can’t pick him up all the time.  It usually takes an hour, but we get through it instead of just having him scream the whole time.

I parked my toddlers who were strapped in the double stroller by a nice lady who was holding her toddler and said, “I know this sounds funny, but can you watch my kids for me so I can-”  She cut me off and said, “ABSOLUTELY!”  I walked 15 feet over to where Justin was screaming on the cement and tried everything to get him focused on a goal and get him calmed down.  Nothing worked.  iPad, iPhones, candy—he didn’t want ANY of the normal bribes.  He was so hysterical and he just looked so anxious and terrified in his eyes.  It broke my heart. 

After a few attempts, my husband panicked, thinking about the massive crowds that were just about to exit the park because the firework had just started—he picked up Justin and hauled off for the quarter mile walk uphill to the monorail and looked at me and said, “Let’s GO!”  I could feel the tears coming and tried to hold them back.  I went and told the sweet mom who was keeping an eye on my kids, thank you, and managed to blurt out the plea, “Say a prayer for us!”  She said she would and then said, “My nephew has Autism too, and it’s so hard—my hats off to you guys as parents.”  Well, that’s all it took for the waterworks to start flowing for me, and within seconds I was a complete mess and bawling as I am running with the double stroller and trying to push this stroller uphill and catch up to my husband and Justin, whom I could STILL hear screaming.  I approached the monorail and asked the man at the door, through my sobs, to please help me lift my stroller because my husband was busy.  I boarded next to them—Justin now in a very confined space, plugging his ears and trying to wriggle out of my husband’s arms and screaming at the top of his lungs.  And I just looked at the ground and sobbed quietly.  I was so overwhelmed not being able to help Justin and seeing him so upset!!  It was super quiet on the monorail, and I could tell that many eyes were on my family.  But not in a mean way, but it that nice way of everyone respectfully glancing towards us to see if they could catch our eye contact and smile or offer help.  And then as I tried to calm down and verbally comfort Justin, everyone on our monorail tram started offering words of comfort to my husband and me.  They ranged from telling us they understood because they had a family member who was a special needs teacher, telling us not to worry about his screaming because it wasn’t bothering any of them.  Their kindness was so great that it was overwhelming—and it started to replace my overwhelming worry, and the tears of gratitude came immediately.

I was so MAD at Autism right then—mad that its crazy rules and regulations, of only which my son knew the bounds of and fought against daily, were over powering the sweet boy who was having such a great time earlier.  And being mad at Autism is obviously a no-win situation, because Autism isn’t going anywhere!!  I was still mad.  I kind of hoped someone could be a jerk about the situation so I could be mad at them instead of Autism—that would’ve been easier, but it wasn’t what I was supposed to learn from the experience. 

Justin all of a sudden wanted to sit on the bench, and there was no room.  The dad next to Justin lifted up his toddler and quickly put him on his lap leaving a space for Justin which he immediately slid into to.  And then out of the blue, something very strange happened.  An older, somewhat peculiar man, who was sitting next to Justin, started talking to him.  At that point, Justin was literally screaming in his face while plugging his own ears.  And this man seemed quite oblivious to all of the craziness and begins to pull out a stamp collection book and starts telling Justin all about his stamps he’s collected for years.  Inside I was thinking, “Are you kidding me??” It only took me a few minutes to realize after observing this man, that he quite possibly had a form of Autism himself.  I looked at him, and then at Justin next to him and it just became so overwhelmingly clear how mortal we all are.  Justin and that man had the same battle in this life, clearly different levels, but they were both still children of God who came to Earth to get a body and both their bodies had Autism to struggle with.  Then it hit me, that none of this mattered, not the tantrum, not the struggles, not the oddities of the older man—none of it!!  It was just one fleeting, unpleasant moment that would soon be forgotten.  I realized that we are all here in this lifetime for such a short amount of time and it doesn't matter how different we are, it's just how much we love each other through our differences.  Justin finally stopped crying before our tram stop, and then the older man looked up at me and said, “I’m sorry if my talking bothered him, I can talk a lot.”  I told him he made me stop crying and he reached out and awkwardly rubbed my shoulder and told me he and his wife love the parks and have been coming for years.  Then he wished me a good night and that the kids would sleep well.

We were all so tired that everyone slept well that night!!  I am so grateful for the blessing of feeling my Heavenly Father’s love through the thoughtfulness of others.  It carried us through that night and helped remind us of all the greater moments we had enjoyed earlier in the day!! 

Moral of the story—Justin LOVES roller coasters, and therefore I will love roller coasters, including the roller coaster ride of Autism!!

ResearchMatch.org…Justin is famous;)

With all the crazy days of ups and downs with Autism, it is nice to have a chance to be proactive and reach out to other parents.

There is a new campaign at Vanderbilt, through ResearchMatch.org, to promote Autism research and Justin's cute face is part of the promotion!!  My handsome little man!!

If you are are parent of a child with Autism, you may volunteer (it takes less than ten minutes!!) and you may be contacted in the future to participate in research opportunities if you match criteria for a study. This is an awesome opportunity to be proactive!!

Click here to check out the campaign and feel free to spread the word to other parents of children with Autism. The more information we can collect about Autism, the better chance we have in treating symptoms and increasing the quality of life for children and families with Autism.

Justin turns 10…

I didn’t think anything could top Justin’s great Angry Bird’s birthday party last year….but we are celebrating so many great things this year for Mr. Justin!!

Justin has grown up so much in the past 6 months!!  He started some new medication that we feel has really helped him focus more and his tantrums have decreased significantly!!

We thought that was great, and then one day we found out that there was an opening at a local private school in an autism classroom.  We were not looking for a school program for him at all….here’s the summed up back story… (We had pulled him from school 4 years earlier after they had physically lost my child at the school---AND couldn’t provide appropriate services for him.  We fought the school district, but in the end we found that 30 hours of ABA therapy services from a top ABA provider is what he needed.  And I couldn’t handle the stress of trying to prove to the school district what a special kid Justin was and that he had potential and that I wasn’t looking for just babysitting.  I felt like I was trying to convince them to love him the way I did and it finally hit me that they would never love him that way, because I was his mom—I WAS HIS MOM!!  Those words rang through my head, and for the first time in a long time I believed in myself as a mother.  I believed that I could be personally inspired to make decisions for Justin and I ended up feeling directed to pull him from school.  It was hard at the time, but I look back now and can see what a turning point that was for Justin and our family.  And amazingly, our attitudes changed, there were no more negative feelings and wasted energy on fighting the schools, only positive, proactive energy and celebrating his daily progress no matter how small it seemed.  And our hearts changed and became happy again.  That’s what ABA did for our family, it taught us how to celebrate every step of Justin’s progress.  With that celebrating, we forgot all about school—it just wasn’t on our minds because we were too happy about everything else that was going on to worry about school dreams.)

So when I saw the advertisement for an opening at a private school that we were already familiar with, I wondered if it could work??  I dismissed it for a minute, almost afraid to let myself dream of that opportunity.  And then I emailed his ABA Supervisor and asked her if she thought it would work….and after several conversations and meetings….. MY BOY STARTED SCHOOL AGAIN!!!  I cried like a baby the night before and the first morning I dropped him off.  I cried with joy for a blessing that came our way that I wasn’t even expecting—how great is that!!  And then it was like a crazy turn of events as each day I picked up Justin from school and he seemed to be making leaps and bounds of progress every single day.  And you want to know the best part of it all???  He LOVES school!!  I still cry about it a few times a week, but it’s all happy tears.  Here’s my sweet Justin writing the date on the board at school…

I remember when Justin was 2 1/2 years old and I so desperately sought answers to what was wrong with my sweet baby as I watched him rapidly lose skills he had previously gained and sink into his own world—I was so depressed and spent every day researching and crying and wondering, “why is this happening to us?!?!”  It was ROUGH!!  It’s such a sweet turnaround now, to be crying tears of joy now instead of all those tears of sorrow!!

Looking back at this picture of me with my first baby, so worried about how I could ever protect him and take care of him!!  All those sweet fears and worries that every first-time mom carries as she leaves the hospital…I had no idea how challenging my life would become, but I also had no idea how much growth those challenges would bring and the beautiful blessings that would follow.  I know that God has blessed us with strength and peace and we have been so blessed by several inspired service coordinators, therapists, friends, church leaders, and family.  I love you, Justin!!

Autism and parades don’t mix…

My husband and I took the kids to a Parade while we were on vacation, with the expectation of seeing a few floats, and the police motorcade and maybe the bagpipes—30 minutes tops!! Just so you know we went in to this with some “real” expectations—and came out of it with a great new reality—

Autism and parades don’t mix!!!

The sweetest thing happened amidst the full blown tantrum Justin had after we had walked 1 mile from the closest parking spot just to catch a glimpse.  As he was screaming, my husband tried everything to help calm him down and nothing was working.  The iPhone??—not good enough.  Riding on dad’s shoulders??—child’s play, not good enough!!  So we resorted to putting him in the stroller (which just in case you think that is ridiculous, it has actually worked really well in the past)—NOT TODAY!!!  He was really mad.  My husband was trying to put him in the stroller, which I’m sure looked like we were stuffing him in the stroller to everyone else watching as he wriggled back and forth, and both my husband and I went into our “we-have-to-be-calm-or-we-are-all-going-to-fall-apart-together” mode.  It was not going well, and I was holding my baby girl since Justin needed to sit in her seat, and then all of a sudden this older woman who was watching the parade jumped up and started walking towards us.  I didn’t notice her at first, since I was in the zone, until she got closer and I looked up at her and saw her concerned smile as she came towards me with outstretched arms and said, “Can I please hold your baby for you?”  I immediately gave her my baby girl and said, “He has Autism, and he is not happy!”  She smiled and said, “I figured he did.”  Shortly after we got Justin in, still screaming, and I took my baby girl back and said thanks and we left to walk back to the car.  Justin did calm down and enjoy his sweet ride for the mile back to the car:)

As bad as tantrums in public can feel sometimes, I am always so touched by the courage of others to lend a hand to a stranger.  I honestly think I would hesitate if I saw some parents dealing with a tantruming child—I think I would be scared that they would tell me to mind my own business or something!!  I have had people offer to help with Justin more than once and it is so moving to feel God’s love for me at that exact trying moment—through someone else.  I hope that I can be that kind of answer to someone else’s prayers, and act that quickly when my Father in Heaven needs me to.

How to talk to kids about Autism…the triumphant Cub Scout story

I was so excited when Justin turned eight years old last year because it meant he could be a cub scout!!  I went out and bought him a full uniform—all the time hearing a voice in the back of my mind saying, “yeah, you can give it a try, but it’s probably not going to work.”  I hoped that voice wasn’t true, but past experiences at church had proven disastrous.

Within a week I got an email from the cub master asking my husband and me if we would speak at the next Pack Meeting which was going to focus on Special Needs and if we could introduce Autism and Justin to the pack.  What a great idea!!  I really hadn’t thought of doing something like that since Justin “went” to church with these same boys—but he really didn’t stay at church when he was there so a lot of these boys might not really understand why that is hard for Justin.  I told him we would, to which my husband said, “you know that means it is just you, right?  You’ll do a great job, and I won’t say it like you.  I’ll watch Justin while you talk.”

I started searching on the Internet to see if there were some good explanations of Autism for kids and after a very long search and not knowing where to even begin with my introduction, I found this website.  This mom did a great job of explaining autism in a way that kids could understand.  I used her example of “pins and needles” to explain sensory issues for Justin and then came up with some other things on my own that related specifically to Justin.

The pack meeting went really well and I was really surprised how many adults told me later that there kids brought up other kids they knew who must have had Autism like Justin too!!

Before we drove out to our family reunion, I sent my cub scout autism introduction talk to my husband’s family (who some of them had never met Justin, and others it had been over 3 years) so they could share it with their kids and talk Autism before we got there.  I think it helped prepare them and it never ceases to amaze me how team oriented kids can be for a good cause!!  They were so accepting of Justin!!

I have decided to post my introduction in case it benefits anyone else in understanding Autism.  I am in no way proclaiming to be an expert in Autism, or explaining it…I’ve just had many wonderful conversations about Autism from sharing this introduction:)

We are so excited to be here tonight for Justin’s first Pack Meeting. As Justin’s parents, we were given the opportunity to spotlight him so that everyone can get to know him a little better.

How many of you have ever broken your arm or leg and had to wear a cast? And for those who haven’t personally broken an arm or leg, you probably know someone who has, right? And you know just by looking at someone with a cast that there are certain limitations or things that they can’t do. You can’t go swimming when you have a cast, right? And can someone with a cast on their leg run a race?? Well, they might not be able to run a race, but they could walk the race, couldn’t they?? They’d just have to go a little bit slower to finish. I’m going to talk to you about some of Justin’s limitations that you can’t see like a cast, because it affects how his brain reacts to situations.

Justin has something called Autism. How many of you have heard the word Autism before??Autism is a condition that makes Justin’s brain react differently than other people his own age. When you look at Justin, he looks just like any other boy his age on the outside, and it would probably take you a few minutes to realize that he’s a little bit different because of his Autism. I’m going to tell you a little bit about how we found out Justin had Autism because it’s not something that he was born with, and it’s not something that you can “catch” from someone like a cold, or strep throat. It’s not contagious.

I bet a lot of you can’t remember some of the things you did when you were a baby, but I bet they were similar to the things that Justin did as a baby. He used to play peek-a-boo, and loved playing with all different kinds of toys, and loved making baby noises. Just before Justin turned two years old, he started to play differently and he didn’t want to look at us anymore or play peek-a-boo, and he started to cry more, and not try to talk any more, and he just seemed really frustrated. We took him to some doctors to try to find out what was wrong, and eventually we found out he had Autism.

There is a really important part of our brain that helps control our reactions to situations and this special part of Justin’s brain just doesn’t work quite right. I’m going to share with you some examples of how this makes Justin feel inside.

Here’s the first example: When you are sitting at school and you are in the middle of taking test, your brain does a wonderful thing in that it will help you not focus on the sounds of your breathing, or the ticking of the clock on the wall, or the sound of the air-conditioning blowing in the room—it helps tune all of that out and lets you concentrate on your test. You probably don’t even think about those other things going on around you because that’s how well your brain is helping you focus on your test!! For Justin, his brain doesn’t know what things are most important to focus on, and so he might hear the clock so loud that it sounds to him like he is in a football stadium with the loud speaker blaring!! Because of that sensitivity to noises, Justin will plug his ears a lot to tune noises out, or just in anticipating that there is more noise coming. That is also one of the reasons why if you walk up to Justin and try talking to him, he might walk right past you. It doesn’t mean you are bothering him, or that he doesn’t like you, but it just means that his brain isn’t letting him focus right then. He does this to me, and his dad and siblings all the time, and we just keep trying to talk to him because you might be surprised that the very next time you talk to him he will make eye contact and interact with you.

Here’s the second example: Have any of you ever sat for a long time or laid funny when you went to sleep and had your arms or legs fall asleep?? Have you ever had that “pins and needles” feeling?? Your brain sends you a message when that happens, to get up and walk around or shake your arms and get the blood flowing again. Justin’s brain is different, in that it sends him messages all day long that he has that “pins and needles” feeling all over his body. Sometimes, he even feels it in his head. So how does Justin handle that message?? When Justin feels that funny feeling, he has to get up and move around to try to get rid of it. That’s why sometimes at church I bet you’ve seen Justin’s dad walking him around the chapel, he does this to help Justin get rid of that feeling so he can come sit down again.

The other most frustrating challenge for Justin is that his brain forms sentences to talk, but it won’t tell his mouth how to form to say the words. So he physically can’t make his mouth say what his mind wants to say. I can imagine that Justin has a lot of things he would like to say to us!  Sometimes he gets so frustrated that he cries. You don’t have to worry when Justin cries because his dad will be with him and do whatever he can to quickly make him happy again so he’s not frustrated. Justin does have a new iPad program that helps him talk and I’m sure he and his dad would love to show it to you.  This helps Justin not be so frustrated.

Even though Justin’s brain doesn’t send him the right signals to react to different situations, we try to help train his brain so that it can learn to react better. Justin goes to a special clinic everyday where he has a therapist with him all the time teaching him different ways to cope with situations and react appropriately. He spends 6 hours a day doing this, just like you all spend 6 hours a day learning at school. Justin won’t ever grow out of his Autism, it is something he will have to cope with his whole life, but we as his parents and with the help of his therapists have great hope for him that he will be able to be happy and be able to go to his Primary class someday and not be frustrated, and go to school again someday. Justin starting cub scouts is a great opportunity for him to learn how to react to things in a really fun environment, because I know you all have a great time in cub scouts. He will have his dad with him to help teach him what to do, and we know that he will love making friends with all of you and interacting with you. How many of you like cars? Justin does too and he is going to love the pinewood derby! He loves making things with his hands.

We know that as you welcome Justin to your troop, you will get to know his infectious personality that we have been so blessed with in our family, and that you will love him like we do.

I have to admit that the day of the Pack Meeting I had a little cry-fest with my sister-in-law.  She has four typical boys, and she is a huge support to me!  I was so worried about saying the right things that night, and she let me read it to her over the phone and helped me with editing—Thanks Elaina!!

Scouting has been a success for us and I will never forget the kindness of the boys in Justin’s troop.