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!!

Happy 15th Anniversary…

Life got out-of-control crazy the past few months, and it is just starting to settle down again….PHEW!!  We did reach a great milestone last month of 15 years of marriage!!  Here’s some pictures of that awesome day 15 years ago…seems like just yesterday!!
I couldn’t figure out what to give my husband for our anniversary.  We don’t ever go “all out” with gifts anyway, which makes it even harder trying to find something meaningful without spending a lot of money!!  I finally thought of getting our pictures taken together!!  We are always chasing the kids in our family photo shoots and can’t leave them for a second to get any couple shots, so I decided to ask my friend Kelly Harris to take our pictures.  She did a great job! Here is my favorite…
We rarely step away from the kids and go out together, it just gets so complicated with the Autism and the severe peanut allergy issue that we usually just stay home!! BUT!! It was our fifteenth anniversary, so we actually left the kids with my parents overnight—awesome break for us, and a restless night of chasing Justin for my parents!!  Did I say thank you?!?!  Thanks Mom and Dad!!  Because, it was so nice to step away for an evening.
I am super sentimental, if you couldn’t tell already, and I spent most of the day during my anniversary trying not to cry because of how blessed I feel!!  I love my husband—he is amazing and handles our stressful life with so much love, compassion, and patience.  Happy 15th Anniversary Sweets!!

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!!

Sew and Show Saturday—#21. Bear Claw Quilt…

My mom made this quilt for my older brother, and it is one of our family favorites!!
The bears on the border are so adorable!!
This quilt hangs in my parents’ cabin, on a tongue and groove pine board wall—which is the perfect backdrop!!  It is the focal point at there cabin which is why it triggers so many fond memories.
I love those little bears!!

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.

Fourth of July Wreath…

One of the most important things that my mom taught me was to look forward to something when your were down and keep moving forward one day at a time.  When I miscarried early in my marriage, she took me out shopping—and I kept thinking, “who can think of shopping at a time like this?!?”  She kept pointing out cute holiday stuff at Hobby Lobby and I muttered sadly, “I just don’t care about anything right now.”  And she tenderly said, “I know, but we just have to find something to look forward to.”  And we did.  We forced ourselves to get excited about Memorial Day and the summertime.  Maybe that’s why I look forward to holidays now, it keeps the days passing by—especially when they aren’t going very well!!
So that’s what I am doing today, looking forward to the Fourth of July already!!
I made this wreath with my mom, and it is made out of red and white Deco Mesh.  It is the first time I have ever used it, and it was SO easy!!  I really enjoyed it.  And then I added polka dot and striped ribbon, and some cork-screw pipe cleaners, and metal star.  I love it!!

Patriotic bunting with chevron fabric…

We are relaxing(or at least trying to) this Memorial Day weekend!!  We are lucky to have family visiting to help keep us calm as we still rough through some of Justin’s tantrums. 
I love my country and all the men and women who have served to help protect our freedoms.  I made a patriotic bunting last year in more rustic colors, you can see it here, and updated this year in bright colors and of course—chevron fabric!!
I love it just as much as I loved last year’s…which one do you like better??
I can’t decide…maybe one for inside the house, and one for outside??  Oh, the possibilities are endless!!
Don’t forgot to see my original post for the easy tutorial on how to make one yourself!!

I am linking to the following parties!

  Ladybird Ln I Heart Nap Time Keeping It Simple Raising Oranges Making Pincushion Creations A Crafty Soiree Fine Craft Guild mop it up mondays Creative Itch Photobucket It's OVerflowing Whipperberry Somewhat Simple HookingupwithHoH Sew Happy Geek The Taylor House Blissful and Domestic > wednesday's wowzers One Artsy Mama Goings on in TexasI'm Topsy Turvy Skip To My Lou

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.

Rice Krispies Cookies…

I love a “fail-proof” recipe, you know the kind you can trust to work every time you make it??  This recipe is my “fail-proof” recipe.  I adapted this recipe from an old Better Homes and Gardens cookbook called Cookies for Kids.
These cookies are chocolate free, which is a bonus for this allergy family—and has a rich caramel-type flavor and a chocolate chip cookie type of texture.
Here’s my adapted recipe:
1 C butter
1 C sugar
1 C brown sugar
2 eggs
1 tsp. vanilla
2 1/2 C flour
1 tsp. cream of tartar
1 tsp. baking soda
2 C Rice Krispies
Turn oven to 375 degrees.  Cream softened butter with sugars.  Add eggs and vanilla an beat well.  Add flour, cream of tarter, and baking soda and mix well.  Add Rice Krispies and mix until just blended.  Bake for  8-10 minutes.  Leave on pan for 1 minute after taking out of oven then transfer to cooling rack.
I usually freeze have of the rounded teaspoon cookie balls and then pull them out a few at a time to bake later—it’s a great freezer-to-baking cookie.  These are definitely a crowd pleaser!!

PB James and Anna Tote Bag patterns…

We have had a ROUGH two months with Justin.  The poor kid has had two partial bowel obstructions, and a sinus infection.  So what do I do when I am stressed?!?!  Sew, sew, and sew…and get two patterns finished!!
The Anna Tote Bag pattern is a perfect beginning pattern.  It is what I use for my beginner sewing students.  The pattern itself includes color pictures for each step of the tutorial making this pattern easy to follow!!
My PB James pattern is a mini version of my PB Inspired Quilt for Little Miss.  I have had several people request that I make quilts to sell in my Etsy shop—and I have 2 of these PB James quilts almost finished!!  It is a great beginner quilt and is also very easy to follow.
You can find these two patterns, along with others, for sale in my Etsy shop.