A New Year

Reflections on the year 2011

I wish I could say that this was a good year, but this was a year of change and trial for our family.  Significant financial struggles, and the theories and opinions of "experts" and parents on autism have slowly taken away my spiritual strength.  Gluten, casein, yeast, ABA therapy, supplements, vaccinations, environmental contaminants, medications given during childbirth, etc., etc.  Everyone seems to know, but no one really does.  I pray that in my lifetime, someone finds an answer.  Maybe there isn't just one.  Maybe there is some truth in all of it.  I find it very strange that children and adults with autism are so much a like, but also so different.  Some never learn to speak except through a computer, some don't struggle with speech at all.  Some show signs from infancy, some slowly slip away.  Some are "saved" with intensive therapy only, some see little to no change in behavior despite therapy and/or dietary changes.  Why?  What is this horrible condition that destroys lives--not just the lives of our children, but the families who struggle to fight for them? 

Today, my spirit feels broken.  So far, I've been really grateful for Aiden's progress, with the sincere thought that all would be alright.  Now, I'm getting inpatient and sad.  I want Aiden to speak so bad.  I want him to look me in the eye, interact with other children, and "come to life".  I'd do almost anything for that right now, yet I feel so inadequate.  I don't know how to interact with Aiden--how to "bring him out".  WEAP called today, and wondered where we were at on the wait list.  Far, far away...unfortunately.  I hate this.  So much so that I've been trying every natural thing I can to try to see some difference.  Aiden isn't having it.  Omega 3's...he won't take them.  We can't afford to keep trying supplements he won't take.  Not that I think the change will be significant, and I know it won't "cure" him, I just want to do SOMETHING to help.  I went to a conference recently on the GFCF diet.  The speaker's son did very well on the diet (he also thought that the mercury in vaccinations cause autism; there is no mercury in vaccinations, just the flu shot).   So I started reading the thoughts and experiences of other parents.  Mothers talked about the significant changes they saw, and I thought...what if?  What if he DID make more eye contact and start talking?  Wouldn't that be such a moment of joy!?  I know it doesn't work for everyone, but what if?  I know what a lifestyle change it would be.  For the short time we tried GF, I was miserable trying to keep him from all the "no-no's".  I gave up quickly.  What if this time it does work, and we can't keep up with it financially?  That was a significant issue expressed by some parents, and I know it would be a problem for us.  We have enough financial stress.  I don't think I can handle anymore.  I just don't want to live life with "what if's?"  So, I'm willing to give it a try...again.  This time we will start with dairy, and remove gluten after.  That will make it easier on all of us.  I'd much rather remove dairy than gluten--better yet, neither, but I just can't let go of it.  My mother told me of a client of hers who has a severely autistic daughter.  She was put on the  GFCF diet early in life.  When the child was finally able to communicate via computer, what did the child say?  "Why can't I have the treats like the other kids?"  Heartbreaking.  She was off the diet after a year, and there was no difference in her behavior.  Do I want to do this to Aiden?  No, but I will if it does help him!

As for having another baby...it feels surreal.  I'm not excited.  All I think about is how hard it will be to get out of the house, and spend quality time with the boys.  That makes me so sad.  Why?  Why another baby now? I don't understand how the Lord works, but I do know that looking back, it always works out for the best.  I felt very strongly that Austin was waiting to come to our family.  I have no regrets now, but I wasn't ready then.  Austin is Aiden's little helper.  He is here to help him, and I'm grateful I listened to the promptings of the spirit.  I just wish it wasn't so hard to be faithful.

I sincerely hope and pray that this year brings positive changes.  I hope that my faith becomes stronger, and that answers come for our family.  That I can let go of the things I can't control, and move forward in a positive direction.  I hope this is a year of great progress for Aiden, and that the year 2012 is the year I have my first conversation with my son.

Lost

Just when I thought the "run away" stage was over...

It is the day after Christmas.  Abe and I took the kids to pick up our "new" van today, and we spent the rest of the day as a family.  The boys love going to the mall--especially the East Towne Mall in Madison--so I convinced Abe to take us there to let them run in the play center.  It was a ZOO.  Seriously.  There were so many people there it was crazy, but all I thought about was letting the kids have fun after we ate some lunch.  The play center was packed too.  There was no place to sit, so we let the kids play and sat on the floor where we could find room.  We watched as they played for a good 20 minutes among kids young and old.  Suddenly, I didn't see Aiden anymore.  "Where is Aiden?" I asked Abe.  Joking, he said, "he was kidnapped".  Little did I know that would not be so funny a moment later.  Aiden was gone.  

I stood up stunned as Abe ran out of the play center looking for Aiden.  Austin was still playing close by.  I didn't panic.  It would be ok.  I stayed for a moment thinking Abe would find him a few feet away, or Aiden would come back to the play center on his own.  Abe came back with empty arms.  

I grabbed Austin and began down a strip of the mall.  I was still relatively calm despite the fact that there was chaos all around me, and Aiden was no where to be found.  He was wearing a bright red sweater.  We would find him, right?  When Abe and I caught up to each other, and still no Aiden, I began to cry.  At that point I would have run screaming through the mall (18 weeks pregnant), if I didn't have Austin in my arms.  Abe went one direction, and I went the other.  There was nothing left to do but pray.  With Austin in my arms, I stood in the center of the mall and prayed.  "Please Heavenly Father.  Please help us find Aiden.  Let him be ok."  Austin kept asking, "where is Aiden?" over and over again.  And all I could say between tears was "I don't know baby."  "I don't know."  Not a minute later, I saw a security officer and yelled for help.  He was also looking for Aiden.  And there he was.  Right in front of us, still running.  I screamed and cried "AIDEN!"  Aiden turned around and ran into my open arms.  I lost it.  I cried harder than I can remember crying.  Aiden started to cry too.  He put his hands up to my face and wiped away my tears.  "Please don't leave me again.  Please don't leave me again."  That was all I could say sobbing so hard that people started to stare.  On my knees sobbing, I held my children tight.  It was all going to be ok.  My kids were both safe in my arms.

I'm grateful for the 2 ladies who sensed that Aiden had run away, followed him, and helped keep him safe.  Aiden ran all the way to the Food Court before the security guard caught up to him, and even he couldn't catch him!  Looking back now, it must have been the perfect scene for a video clip on UTUBE titled, Mother Finds Lost Son in Crowded Mall.     

Today, I'm grateful for answers to prayers.  I held Aiden a little tighter tonight thinking of what my life would be without my special little boy.  Although Aiden may not understand that it isn't safe to run away, he DID understand how much it hurt me.  The moment I found him will always be with me.  Not so much the fear, but the love and empathy he expressed when he looked into my eyes and wiped away my tears.  This little boy has a lot to teach me... 

Christmas

This is the first year I had the desire to put up decorations and listen to Christmas music!

Although I consider myself a very spiritual person--being LDS is a way of life for us--Christmas always gets the best of me each year.  In the past, worldly concerns overshadowed the joy of the true meaning of the holidays.  This year, I've focused on remembering the birth of our Savior, and all that he taught us in his mortal life.  For me, his short life defined the true meaning of love: service.  He dedicated his life to serving others, and gave up all that he had for each of us, no matter how significant our sins.  Love, is truly giving all of yourself for someone else.  

I never recognized that until I had children.  My children are my heart and soul.  They give me purpose and joy.  I love to watch Aiden and Austin meet milestones!  Seeing Aiden overcome so much is the most incredible blessing!  Today, I'm grateful that even though we struggle financially more and more each year that passes, I still choose to be home with my children.  Going back to work full-time would solve many, many concerns, but it would also ruin everything, and break my heart.  My faith is in Him.  Despite having little means, we have everything and even a little more.  I'm grateful for my faith, and I pray that this coming year is one that focuses on the needs of others.  I have a testimony that serving others is where we find our greatest happiness.  I have found that happiness through giving my all to my children.      

Behavior Therapy

Back to researching autism theories, thoughts, and experiences...

I just completed the book, The Boy Who Loved Windows, a book written by a mother who fought for her autistic son, and won.  This book was different from the first one I read.  Although it was also a personal experience from a mother's perspective, this woman's journey was slightly different.  Her son showed significant sensory concerns from the very beginning.  She knew something was wrong, but doctors were no help.  The child had trouble breathing, eczema, and digestive issues (he threw up a lot).  He didn't gain weight, and seemed to be "uncomfortable" most of the day.  GI doctors told her to "feed her son anything" they could, and turned away from the idea that food allergies were a concern.  She knew better, and finally, a doctor agreed to test for food allergies.  Sure enough, the child was allergic to milk, wheat, and several other foods.  Eliminating them made a significant difference in his overall health, but they still had a long road ahead of them.  Through her research, she found a program called REACH.  The program labeled the child with SID--sensory integration dysfunction, and he began therapy long before his first birthday.  Months later, a new specialist would come into play--one that specialized in autism.  Although not formally diagnosed with autism, the signs were there, which warranted further therapy.  The mother continued to research, and found psychologists who specialized in autism: Rimland, Lovaas, and Greenspan.  She was counseled by her son's therapist to be cautious of Lovaas' methods, and decided to turn to Greenspan's approach--20-30 hours a week of "floor time," which is basically intensive play therapy.  Despite considerable efforts, the mother was unable to get enough help from REACH to complete all 20-30 hours.  So, she did it herself.  Day in and out, she researched and "played" with her son.  She did this play therapy for hours a day for almost 5 years.  She described how her relationships struggled--she lost friends and nearly her husband, and eventually, she almost lost herself. She spent little time with her older daughter, who spent much of her time with friends, family, or in front of the television.  But, her son thrived, grew, and overcame all odds.  A boy who they thought may never walk or talk walked at age 2, and talked far beyond his developmental age.  He was intelligent, active, and happy.  Sensory concerns fell away, and by age 5, you would never know that the child had so many struggles.  The label "autism" was gone.  

I admire this mother's hard work, dedication, research, and love for her son.  It made me think a lot about where my priorities and capabilities are.  I do a much better job getting Aiden involved in the community and sensory activities, than I do with "floor time".  I feel awkward trying to interact with Aiden.  He doesn't seem to understand or respond when I try, and I give up easily.  Add another child (soon to be 2 more), and significant stress elsewhere, I feel inadequate in my "play" capabilities.  However, Aiden is MY son, and much different than this child.  I have to believe that God gave me Aiden, because he knew I could give him what he needed and vice versa.  There is so much to learn from special needs children!  

Unlike the mother in the story, we have decided to go with the Lovaas approach.  Aiden remains on the waiting list for 20 hours of therapy a week.  In the meantime, Aiden still goes to school 4 days a week half days (where he receives speech and occupational therapy), and he receives extra speech therapy at the Waisman Center.  I try to attend play dates as much as possible (which is harder without a car now, and trying to get hours at work).  I get him involved in physical activities whenever I can.  The other day we spent nearly 2 hours at McDonald's playland because Aiden couldn't get enough.  I was happy to see him play "chase" with the other kids, smile, and laugh.  He scripted a lot (repeating words from a wide variety of shows), but I was grateful for his moment of complete happiness! 

This book brought up even more questions.  Why do some children show significant signs early on, and some show few signs until they are 18 months old?  Why do some have significant gastrointestinal problems while others don't?  For some, sensory concerns are much more prominent than speech delay and vice versa.  Why?  One thing is clear: the cornerstone of therapy is not diet, supplements, and other alternative therapies (all of which this mother used); it is intensive behavior therapy--period.   

 

David

Yesterday, I met a young autistic man who made a significant impact on my life...

David is a 20 year old young man with autism who says he is an "inspiration to others".  He is active in the Boys and Girls Club, and helps other people with autism.  He is a success story.  The more I research, the more books I read, and the more people I meet, the more clear the autism "picture" comes together.  Yes indeed, people can "overcome autism".  Even those with severe struggles overcome this life changing diagnosis.  David could look me in the eye and have an appropriate, mature, insiteful conversation.  I couldn't hold back the tears when he introduced himself.  This could be my son in 16 years.  I was proud of this young man, and all that he had overcome.  I empathized with his mother and all that she went through in his younger years.  Back then, they didn't have the programs they do now, and David was diagnosed much later than Aiden, so most of his concerns were labeled as "behavior problems".  David discussed what his life was like, his social support, the challenges of transitioning to change, and how he learned to communicate.  David would often use lines from movies to start a conversation.  Aiden does the same exact thing.  His sentences are lines from movies: Dora, Curious George, Thomas the Train.  Aiden can "script" line upon line from these shows.  This isn't the first time I've heard of scripting.  Aiden's therapist said that one child would use a line from the Lion King every time he was frustrated.  That was how he expressed emotion.   Aiden sat on the potty for the first time yesterday, and what did he say?  "Good monkey.  You sit right there."  This is a line from the movie Curious George.  The man in the yellow hat puts George on the potty and tells him to stay.  He was scripting, so I'm not sure if he understood at all what the potty chair was for, but he sat on it (when normally he gets tense and won't go near it), so I considered that progress. 

I look forward to many more meetings with David.  I learned so much from him.  There is only so much understanding you can get from books.  David made it all come together for me.

Things I've learned about autism:

*With significant help and guidance (therapy), especially early on, some children diagnosed with autism show NO signs of it years down the road.  David had some indicators of his diagnosis, but he is living a fullfilling life!

*Although not a cure for autism, some children with the diagnosis do well with a hypoallergenic diet.  Those with eczema, respiratory concerns, rashes, and/or gastroentestinal issues (nausea/vomiting, diarrhea, constipation) should be tested for food allergies.  I've read numerous accounts of parents who swear that a gluten free, casien free diet helped their children (even though doctors don't always agree that this is affective treatment).

   

*A diagnosis of autism doesn't mean that the person is unintelligent.  It means that the brain is wired differently.  Someone described it like this--imagine an office space with many, many rows of desks, but some of the people at those desks can't communicate with the others.  The communication signals aren't working correctly.  That is like the brain of an autistic person.  Some people with autism are exceptionally intelligent (i.e. Temple Grandin received her PhD and revolutionized the cattle industry).  They just have a different way of looking at life.  Aiden already knows how to spell his name, say his ABC's, count to 20, and he names many shapes and most colors.  He is learning, maybe just a little differently than his peers.  He is very intelligent, but he can't find the words to express himself.  Sometimes he acts unusual, because that is how he responds to the senses around him.  His perspective is different.  Sometimes, I think that has its advantages!

       



Milestones

This holiday season, all I want for Christmas is to have a conversation with Aiden; but, I'll take these milestones...

We have been working on that all summer, and he finally got it in November!

He learned this in Early Childhood :)

This is going to be a great year for Aiden!  I really think his speech will take off next year, and I will indeed be able to have a conversation with him!