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!

Thanksgiving

This is the time of year we are reminded to remember the things we are most thankful for...

1.  First and foremost, I am so thankful for you, Austin, the baby on the way, and the gospel that gave me my forever family!  While I was in college I thought, I'm going to excel in my career, help so many people, and love what I do!  When that didn't happen, I wondered, what is next?  what do I do now?  And then I had you Aiden, and suddenly, life took on a whole new path and meaning.  Words just can't express what I want to say, but the past 4 years have been the best in my life.  You are my greatest blessing.  For me, nothing can compare to the gift of being a mother.  If I didn't find the gospel in my last semester of school, I truly believe my life would have been dramatically different.  The things that mattered most would have been postponed, or may never have happened.  I owe all my happiness to a Heavenly Father who knew what I needed, and when I needed it.   

2.  Despite significant financial hardship since I gave up my career, I'm grateful that I never missed a single milestone.  I still remember the details of your firsts--when you first sat up, crawled, and walked.  I will never regret staying home with my children.  You have always had food, clothing, and shelter.  We have a sandbox, swing set, and tons of toys that I never bought or asked for.  The Lord has always provided what we needed through the hands of our family and dear friends.  I still can't believe that I haven't bought a single article of clothing for you or your brother.  Words can't say what a blessing that has been for our family!  I'm grateful we never fail to pay our tithing.  We never have enough money "on paper" to make ends meet, but we always meet our obligations.  My faith is as strong as ever due to the miracles I've seen through paying our tithing. 

3.  I'm grateful for my life.  There was a time in my youth when I gave up.  I didn't want to live anymore, and I tried to take my own life.  I look back at that moment now, and I'm grateful that I didn't succeed.  I think of all the wonderful things I would have missed, and all the good things that came out of something terrible.  Now, I thank Heavenly Father for the gift of my life every day, and I think about how much I have to look forward to.  Life is a gift.  There are times that are going to be very hard, but it is always worth it to fight through.  Nothing bad lasts forever, and there is always something to learn from every experience.  Never give up Aiden.  Never.

 

So this Thanksgiving, I'm grateful for my faith, my children, and always having what we need.  I'm grateful for family and friends, and our home.  I'm grateful for the challenges that make us stronger, build character, and give us spiritual strength.  I'm grateful for my life, and I pray that I continue to do the best I can with the time the Lord has given me.  I know you will succeed Aiden.  I know it.  Keep fighting, because there is so much to live for!    

Nutrition

Aiden may just be another picky eater, or it could be sensory related, but his diet lacks variety and balance.

If it was up to Aiden, he would drink chocolate milk and eat cereal, bread, crackers, and popcorn all day.   If I'm lucky, he will eat peanut butter with breakfast.  He usually never eats dinner, and the protein for lunch must be beef jerky, spicy pumpkin seeds, or a PB&J, which is the only combo food Aiden will eat.  Aiden hasn't eaten a single fruit or vegetable since he was 1 year old.  He will drink some juice, but he prefers milk.  I'm not concerned that he isn't meeting his calorie or protein needs.  I'm certain he is, but I am concerned with his vitamin and mineral intake, especially iron, vitamin A and folate (thank goodness they fortify grains ((most gluten free grains aren't)) with B vitamins, iron, and folate).  Aiden enjoys whole wheat bread all by itself!  I felt guilty giving him the gluten free kind because I knew he was missing an opportunity to get B vitamins, iron, magnesium, folate, and fiber.  Although fortified gluten free cereals would provide some or all of those nutrients too.  Aiden loves Chex, but where is the fiber???  He doesn't eat seeds every day...

I've tried to "hide" veggies in foods such as muffins and pancakes, and I've made "green" smoothies, but Aiden doesn't fall for it.  He will dip chips in salsa, but the minute he gets a chunk, he spits it out.  Any fruit or veggie I add to something has to be pureed.  I tried squash in mac and cheese, but he doesn't like pasta.  The pumpkin pancakes with whip cream were AWESOME, but nope--Aiden didn't touch them.  Today, I had the boys help me make pumpkin pie. Aiden loves sugar, and he rarely gets treats (except at grandma's), so I'm hoping he will try it!  Finally, some vitamin A that doesn't come from milk!

Some tricks that work to get him to eat more nutrient dense items are:

1. No snacks between breakfast and lunch.  If he is hungry, we eat lunch early.  This isn't always easy when we are at playdates, so I give in occasionally knowing full well he won't eat lunch for me.  

2.  Only 2, 8-10 oz cups of milk daily (the recommendation for his age is 16 oz max/day).  Period--no more!  He gets a cup of juice a day ("experts" recommend no more than 6 oz/day), and the rest is water.  This is very difficult for Aiden.  He gets mad when I don't give in.  He rarely drinks his water (I don't blame him--I've struggled with the same thing for years, but I'm striving to be a good example).  I've found that he eats A LOT more with less fluids, and it gives me more opportunities to add foods into his diet.  

3.  When we do have a snack, I try to give all of us more healthy choices even though Aiden prefers crackers.  Frozen yogurt sticks work sometimes, and he will eat the occasional cheese stick, beef jerky (not happy with the sodium or nitrates, but he needs the iron), spicy seeds, and 100% fruit strips usually work too (ok, so he does eat processed fruit).  Aiden loves popcorn--even the healthy versions, so that is always a good snack too :).  They make sweet potato chips now, and he will eat those, but I still wish he would eat something fresh and unprocessed!

Aiden continues to have no reactions when it comes to foods.  He has no skin issues, no digestive issues,  sleeps great, and has no ear infections, or anything else that make me want to try the GFCF diet again.  He is rarely ever sick.  Part of me is curious what would happen if I tried it for 3 months as recommend, but now is not the time financially or otherwise to start it!  The holidays are coming up, and there may be a lot more changes coming our way that we are currently pondering and praying about.  This may be another year of great change for our family...or not.   

Pregnancy

Aiden is going to have a baby brother or sister in May!!!

As indicated in my previous post, this was not a decision that came lightly for our family.  Between financial hardship (we are struggling to get Abe done with his final 3 semesters of school) and Aiden's challenges, this was a decision based on pure faith.  I knew in my heart all along that this was the right choice, it was just a matter of making the decision.  The minute I made it, we were pregnant, which was a bit of a surprise (I thought we would have a few months time).  So, here we are 11 weeks pregnant with baby #3.  How quickly time passes by.  Austin will be 2 this month, and Aiden will be 4 in January. 

Although they do not know what causes autism, current research is focusing on environmental and heritary factors.  I've read concerns about pesticides and pollution from highways (there is a higher percentage of children born with autism by mothers who live my highways--a possible link?), and I know several families who have autism in their history, and they have an autistic child.  I'm certain both factors play a role.  For us, I think it was family history.  However, I find myself holding my breath when I go jogging and a car drives by.  I wear gloves when I need to touch a chemical (I use mainly vinegar at home, which I have no concerns with).  I avoid paint fumes, and anything that may be an environmental hazard.  However, we live in a chemical world.  You can get BPA residue from receipts, plastic bottles and dishes...pesticides from fruits and vegetables (we cannot afford to eat 100% organic).  And so, I choose to live and let God take over.  Although I personally know a family, and I've read about families with several autistic children, the chance is about 5% that I'll have another child with Aiden's challenges.  Honestly, that isn't what held me back.  My fear is balancing my time between the 3 children.  I don't want Austin left out, and I want Aiden to get the attention he needs to learn.       

I played with the boys a lot today.  I pumped up the volume on the children's music, and brought in the toys from outside to play with.  Later we played with Playdo, trains, puzzles, wrote on the chalkboard, read some books, and did some flashcards.  Austin was quick as a whip.  He knew some colors, almost all the pictures, and put the puzzles together perfectly, identifying each piece.  This was the first time I spent a "therapy" session with Austin.  Honestly, I've been so focused on Aiden, I didn't even think to "test" Austin.  But, as expected, the answers came easy to my 2 year old.  For Aiden the questions are much more challenging and thought-provoking.  He seemed distant and distracted.  Although he is making great progress, it is still very hard to see him struggle with what should come easy and natural to him.  He will get there, I know, but it makes me sad some days.  Having another child will be difficult.  I feel like I've just found balance between the 2 children, and I'm going to distrupt it.  But, the decision felt right, and all I can do is have faith that it was the right one.       

Holidays/Progress

Halloween is quickly approaching....

I read an article about children with autism and holidays such as Halloween.  Costumes, makeup, and wigs, etc. may aggrevate sensory concerns for some children.  Candy may be allergenic, and the general concept itself can be a challenge--364 days of the year you knock on a door then enter, but 1 day you don't?  There was a story of a mom with 3 autistic daughters who had to chase one up the stairs of a strangers home.  She just didn't understand the concept of the holiday.  Why couldn't she go in?

I feel blessed that Aiden doesn't seem to have such concerns.  So far he has enjoyed wearing his costume, and even trys to put it on himself.  I've never tried to put makeup on his face.  I don't think he would sit still for that.  Candy hasn't caused concern, and last year he did just fine Trick or Treating.  He didn't have a clue what was happening, but he seemed to do alright following our lead.  However, I'm a little sad that I can't ask Aiden what he wants to be for Halloween.  I'm certain he has no idea what his costume is for.  He still struggles with making decisions, so even giving him a choice between 2 costumes doesn't work out so well.  On the postive side, (and there always is a positive), we can't afford costumes this year, so we borrowed some from a friend who--I'm certain--can create almost anything.  Aiden is going to be a dragon this year because of her :)  Austin will be a green dragon, and Aiden will be a blue dragon.  I have a lot of pictures of them chasing each other in costume!

Aiden is making very good progress.  He is saying more sentences, or at least, trying to put more words together such as, "no diaper change".  His vocabulary is extensive.  I'm hoping one day it just "clicks," and he finally figures out how to put those words into appropriate sentences.  Potty training is an "adventure" I'm postponing for many reasons.  Aiden is getting harder and harder to change.  He fights it every time.  I need to start small and work my way up (like changing him in the bathroom every time, and telling him this is where we go).  Aiden will be 4 in 3 months.  My goal is to have him potty trained by 4 1/2 or 5 at the latest.  It will just take extra effort!