A Long Journey

I am so sorry that I have been absent from the blog.  This school year has brought many blessings and many challenges worthy of documentation.

The 3rd year of dental school is SO MUCH BETTER than anything we've known prior.  My husband is usually home for dinner, he never misses family night, and he is actively engaged in getting the kids to bed every night.  The fact that my burdens have been lightened in this way, is truly a blessing.

Darren is starting to grow out of the terrible threes.  He still my little wrecking ball, breaking things left and right, but he says the cutest things and makes me laugh all day.  He loves to read with me.  The laundry is often ignored as the picture books pile up next to me on the couch for story time.  He loves all things superhero.  My aunt gave him a cape for Christmas, which he wears everywhere - to the grocery store, on field trips, to the bathroom... EVERYWHERE.  He loves Batman and Superman and demonstrates his displeasure when his pajamas just have frogs on them.  He thinks that pants with stripes down the side are "Cool Pants."  Anything without stripes won't do.  He is still the first in the house to say, "thank you" for anything fun that we do.  His constant gratitude is a great example for his older brothers.  He loves to snuggle and still likes to hold my hair (I'm ready for that to stop.)

Daniel has hit the mood swings that are typical of boys his age.  The smallest things seem to really upset him and he struggles to calm himself down.  He thrives on attention and has a hard time asking for what he needs.  The wii has become a great temptation for him.  Finding balance and following our rules with regard to video games is often a source of frustration for him.  He is still such a hard worker, always willing to do his part around the house.  He is my most helpful child.  Daniel, ever the compassionate kid, impressed me the other day as he wrapped his arm around a friend from church who was crying and sought to comfort him.  Daniel has a sweetness that is so sincere and adorable.  Daniel is enjoying 4th grade and has a wonderful teacher!  She has a wild wardrobe but is a brilliant teacher.  She does a great job of challenging the kids and really expanding their vocabularies and their knowledge of technology in the classroom.  Daniel is currently at a 9th grade reading level and has just finished the Percy Jackson series.  When I was his age, I was wishing that I only had to read books with pictures.  I'm so proud of him.

Dallin is my salvation.  Dallin is here to teach me love through his example, patience through dealing with him, and courage in fighting for him.  This blog entry is mostly about DALLIN.

Before kindergarten, Dallin offered us some challenges that we dismissed as just part of his personality: struggles brushing teeth, a lack of desire to do fine motor activities, and he was my screamer.  Once school began we saw struggles develop in the classroom.  Dallin's teacher said that he was always quiet (a big surprise) but he didn't get his work done.  Staying on task was difficult, completing a task was almost impossible, and working with peers was quite the struggle.  Dallin has always been super affectionate.  I knew that there wasn't an outlet for that at school, and thought the lack of hugs throughout the day might be a problem.  We sought help through the school counselor.  Dallin met with Mrs. Fullerton weekly and eventually daily to work on behavior modification and find solutions.  Dallin had a hard time keeping his cool when someone entered his bubble.  Also, we began to see sensory issues in Dallin.  Every morning was full of meltdowns related to Dallin's socks.  If he couldn't get all the bumps out, and the seam lined up just right, if one sock felt too lose, Dallin had a meltdown.  Many a morning I carried a screaming kid to the van because of a bumpy sock.  Other parents mentioned their kids struggled with the same thing at that age.  So, we just dealt with it the best that we could.  It was exhausting.  Some mornings I just prayed to make it through.  I told myself that he'd grow out of it.

Halfway through that really tough year, we took Dallin in for his 6 year check up.  We talked to the pediatrician about what we were seeing and she recommended we call the psychology dept. at Children's Mercy Hospital.  After a brief phone interview with CMH it was determined that Dallin's needs were not severe enough to be seen.  At that time there was an extensive wait list to see a psychologist.  We investigate other avenues and found that CMH was the only place with the program that we needed that accepted our insurance.  The counselor at school suggested we try a new point system and a system of rewards and consequences to help motivate him.  We didn't see a change.  We suffered through second semester with trips to the recovery room, yellow days (as opposed to green), and more meltdowns than I can count.

Summer came and it was wonderful!  I had my happy little kid back.  I got 50 hugs a day from that little one and numerous smooches too.  Summer meant flip flops and no more socks (except Sunday).  Life was good again.  We were hopeful that the summer would give Dallin time to outgrow some of those issues and that a new classroom/teacher would change things for the better.  I was encouraged when I met Dallin's teacher.  She was very affectionate, giving everyone a hug.  I was happy to learn that she had been teaching for almost 30 years, and she spent some of that time teaching special ed.  I thought this was going to be a great year!

It was obvious right away that Dallin was struggling.  I quickly asked to meet with the teacher and discuss the issues we were facing in kindergarten.  She came up with an action plan similar to the point system and we tried it out.  Dallin began to really struggle.  His sensory issues became magnified.  Suddenly he had to have his pants so tight that he couldn't even button them.  He needed his shirt to be high on his neck.  Sleeves could not touch his wrists unless they were coat sleeves, and those had to be strapped extra tight with velcro.  Dallin, always a picky eater, starting limiting his palette to very few foods.  No matter what I put on his plate or what dessert we offered as a reward, he would only it taquitos, breakfast foods, or ham & cheese with crackers.  We saw many meltdowns at the dinner table because I kept putting things on his plate for him to try that he didn't like.

The trials with Dallin were overwhelming.  I felt like I was missing something; some important piece of information to tell me how to parent this kid.  What I doing wrong?  What had I done wrong?  Why couldn't he just behave?  The self doubt was almost too much to bear at times.  Worried that others would judge me and my parenting, I felt very alone in this struggle.  I felt the teacher was judging me and I felt ill-equipped to handle this.  

In, my next meeting with the teacher I asked if she had seen anyone like Dallin in her 30 years of teaching and if so what worked for him/her.  She replied that medication was the answer.  She remind me of her opinion as to the medicinal solution several times in the weeks that would follow.  She thinks he's got Aspergers and possible ADHD.  She kept comparing Dallin to her nephew who struggles to deal with his Aspergers.  I spent hours researching online.  I studies Aspergers, Autism, Obsessive Compulsive Disorder, Oppositional Defiance Disorder, Attention Deficit and Hyperactivty.  If it is a childhood mental illness, I studied it.  Nothing seemed to really fit.  I found information on the school district website that they have diagnosticians, occupational therapists, autism specialists, and other counselors to help with special education needs.  When I asked the teacher to tap into these resources, she explained that we could not utilize those services without a diagnosis.

So, I went back to our health care provider and searched for more options.  I reached someone at Children's Mercy who finally agreed to put Dallin on the 6 mo. wait list for help in their behavioral sciences dept..  I also took Dallin to a child counselor who quickly made it clear that she was not interested in taking on a Medicaid patient and referred us back to the school for testing.  The school district said that their people can't get involved until we have a diagnosis.  Eventually, I found a therapist and social worker who agreed to meet with Dallin on a regular basis and help him work through some things.  We started attending weekly therapy sessions together (1 parent and Dallin).  During these sessions we discovered that Dallin can be still through play but reacts physically to uncomfortable situations.  We have seen some progress with this counselor.  She has helped Dallin to try hard things and has helped to repair some of the damage done to his self esteem this year.  She acknowledges that a lot of Dallin's issues seem to be environmental.  There is something about the atmosphere at school that causes him great anxiety.  (If my teacher wanted to drug me, I'd have some anxiety too!)

We really began to struggle with the instructors approach to Dallin.  She would punish him for not finishing his work.  Ex: If Dallin didn't finish a series of worksheets, she would keep him in from recess.  I don't see how a kid with anxiety in the classroom needs more time in the classroom.  This doesn't solve anything.  In fact, it made things worse.  His teacher would often inquire about the wait list and if we had seen anyone yet.  One time, after Dallin had his 100th meltdown over his shoes, I kept him home from school.  He was hysterical in the car on the way to school and I didn't feel comfortable dropping him off.  Dallin refused to learn to tie his shoes.  He would scream that it hurt his fingers and he wouldn't try.  It was getting harder and harder to find velcro shoes in his size.  He would refasten his velcro numerous times throughout the day to make sure his shoes stayed tight.  Dallin repeatedly wore out the velcro on his shoes.  On this particular day he just couldn't get the shoes to stay tight.  So, I took him shoe shopping.  There could not be a less fun thing to do with Dallin.  If he put a shoe on that didn't feel good he would throw a tantrum and lose control.  Staying calm through these fits was very difficult but absolutely necessary to our survival.  While we were out shopping for shoes that day, the teacher called to find out why he was absent and told me that Dallin NEEDED to be at school that day because of MAP testing.  I could not believe the audacity of this woman.  I had called to inform the school that he would be absent and I even mentioned why.  I don't care if I think my kids need to stay home because they haven't had enough time playing with play-doh.  If my kid needs to stay home that is MY business not hers.  She laid this huge guilt trip on me and requested that I bring him back to school to complete his testing.  It was suddenly clear to me that she did NOT have his best interest at heart.

I spoke to a school administrator and scheduled an appointment to speak with the Principal.  I asked to switch teachers and was informed that this was not a possibility.  I was told that the principal only meets with parents when the teacher is present.  I expressed my concern and mentioned that we were considering home school.  The principal was able to meet with me in private that day and addressed my concerns.  She validated my concerns and asked for a chance to fix things and make it right or at least better.  She put together a panel of specialist from the district to evaluate Dallin.  She utilized her powers as principal to see if Dallin would qualify for special assistance.  The principal also called a meeting for James and I to discuss our concerns about how things were being handled in the classroom.  The principal put a stop to some unhealthy practices and agreed to keep a close eye on the teacher.

Dallin received testing from almost every specialist in the district.  He had an I.Q. test, academic testing, speech testing, autism testing, gross and fine motor testing, and some sensory testing.  The testing was done at school over the period of about 6 weeks.  We were so anxious to hear the results.  The results ended up not telling us much.  Dallin has an above average IQ, an above average reading level, he scored high average or above average on everything except the autism test.  There he showed no signs of autism or aspergers or anything on either spectrum.  His gross and fine motor skills were normal.  The panel of experts who tested Dallin all mentioned that he was inattentive at times and could have tested much higher if he had demonstrated more focus.  The action taken as a result of these tests is that the district has determined no need for special services.

It was wonderful to learn that Dallin won't have to suffer his whole life with the challenges of autism, but it was frustrating to be back at square one with no answers.

I have been researching home school in Missouri and have spent many hours on my knees praying to know if this is what's best.  The answers haven't come yet.  We really haven't had any clear direction as to how to proceed from here. 

A few weeks ago I got the call that we were at the end of the wait list.  Children's Mercy had a PHD Child Psychologist ready to see Dallin and,  after some work, he was also assigned to an Occupational Therapist.  We meet with the psychologist for the first time in March, but we were able to meet our OT for the first time yesterday.

I cannot tell what a miracle it was to meet with this person.  She had seen all of Dallin's symptoms before and was familiar with how to treat them.  She explained that he has sensory processing issues.  He is hypersensitive to light touch.  In order to desensitize himself from a kid brushing past him at class or someone bumping his foot under the desk, Dallin need to wear his clothes extra tight.  Imagine if I was squeezing your arm really tight.  You might not notice a gentle tap on your shoulder.  Dallin will require deep muscle or proprioceptive stimulus in order to handle the sensory load at school.  The OT put Dallin on a sensory diet, which had nothing to do with food.  He has to have as much deep muscle stimulus as we can possibly give him throughout the day.

Here's a sample day on a sensory diet:  Dallin will carry all the clothes that he's going to wear that day and his shoes to the bathroom squeezing them tightly.  He'll wash his face with a washcloth giving it a good rub.  He'll get dressed and then I will help him wheelbarrow walk back to his room.  He'll sit on an exercise ball at the table during breakfast.  He'll do 5 jumping jack outside the car before we get in.  When I drop him off at school he'll have a large thermaband (like a wide rubberband) around the legs of his chair that he can put his legs into and kick against.  At 9:15 the teacher will ask him to wipe down all the chalkboards.  At 10:30 he'll take a note to the principal and when he's in the office he'll do 10 wall push-ups.  These activities carry on and are spread throughout the day.  Gross motor activities like bike riding are required every day.  Before he went to bed last night, we pretended he was a loaf of bread and we kneaded him on his bed then rolled him into a ball, patted him into a loaf, pretended to roll him into the oven, slice him, and butter him.  He laughed and giggled the whole time!  He was so completely delighted with it all.  He loves the attention and he love the proprioceptive stimulation. 

When we walked out of our OT appointment yesterday I made it to the van and then sobbed.  It was so nice to have someone who could tell me how to help my little angel who is struggling.  Finally, someone knew what was wrong and had answers.  It was so nice to have someone finally get it.  I was so tired of hearing people say he was a bad kid, or say that nothing's wrong, he'll outgrow it.  I knew he was suffering, but I didn't know from what or how to make it better.  My emotions overcame me as I realized that we have some answers and a direction.  There is hope.  To not know how to help Dallin was killing me and the stress of it was so consuming.  Everyday that I saw his anguish as we reviewed his day and his behavior, I felt so helpless.  My thoughts were so consumed with this struggle all the time.  When I would sit to blog about it, I just felt overwhelmed.  I wanted to document this struggle but I just couldn't deal with the fact that I didn't have any answers.

There are not words for the relief I feel and the burden that has been lifted.  Just knowing what we are dealing with is such a blessing.  We still have other pieces of the puzzle to figure out.  Many of Dallin's symptoms are environmental.  He has anxiety issues and inattentiveness that need to be figure out with the psychologist.  The OT said it is hard to know if Dallin's sensory issues are causing his anxiety or if his anxiety is causing his sensory issues.  But for now, we have something we can do to help.

I know that this is still a long road that we're on with Dallin.  This break in stress of it has allowed me to see how far we've come and what we've learned.  I have learned some patience.  I have learned that we can do hard things.  I have learned to rely on my husband and to seek for priesthood blessings.  I have learned how to have courage and fight for my children.  I have learned the value in maintaining an eternal perspective.  Sometimes the only thing that kept me going was knowing that someday we will have perfect resurrected bodies and Heavenly Father has a perfect plan for us.

I am so thankful for my little middle-child.  I am thankful for all that I learn from him.  Mostly, I am thankful for his sweetness, his love, and the tremendous joy that he brings to our home.  I feel blessed to be given such amazing personalities around me to travel with on this journey.