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!

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! 

Thoughts

This is a personal journal entry...random thoughts I have each day.

I thought today of what it would be like if Aiden didn't have his challenges.  I'm a little afraid that Austin is going to "out grow" his brother in words, potty training (that will happen), and play.  They are such good friends now.  Developmentally, they are the same age to me.  As time goes by, I'm a little worried that Aiden will get left behind.  I hope he learns to make friends.  We go to the park a lot, and young children--about his age--always ask his name and try to interact with him.  Aiden doesn't respond to this at all.  Although he is making more eye contact, it is really only with people he knows and feels comfortable with.  I don't blame him, and I'm sure this is an issue with some children who are just very shy.  The unknown continues to be my biggest hurtle.  Sometimes I think Aiden is going to be just fine, and other times I think, what if he isn't?

Haircuts are a major cause of stress for both Aiden and I.  Before the age of 2, Aiden got his hair cut at Kids Cuts.  He loved to sit in the car and push the buttons, and could care less what else was happening.  Around the time Austin was born, I took Aiden in for a haircut, and all he did was scream.  He wouldn't even get in the car.  I thought he was just acting out because of the new baby.  I was wrong.  Aiden HATES to have his haircut!  A scissor is way too dangerous, so I've resorted to buzzing Aiden's hair when it gets unbareably long.  I have to physically hold Aiden between my legs to cut his hair.  I don't know if it is the buzzing by his ear and/or the feeling of the guide, but it is a total nightmare.  I wish Aiden could tell me why he is so afraid of the clipper.  Austin isn't a fan, but he is more annoyed with it than anything.  I've tried to let Aiden play with it before hand, but once he sees it, it is over.  Poor kid is going to have a buzz cut for a long time...

Potty training...I'm not sure what to do for Aiden in this regard.  He fights me more and more when he needs a diaper changed.  Usually, I have to change him when he is standing up.  Indeed, I don't enjoy it either.  Aiden is getting very tall, and it feels a little odd changing such a big boy's diaper.  He shows no signs that he is ready or willing.  At school, he won't even sit on the potty.  I'm going to apply for diaper assistance for him.  He will be on disability soon, and they will help us with diapers when he is 4 years old.  I don't see him potty training in the next 4 months.

Personally, I'm happier than I've been in a long time.  I've let go of a lot, and chosen to find joy in this journey.  My greatest joy is watching my children laugh and play, and hearing Aiden's sweet voice come to life.  I'm so grateful for the sacrifices we have made, so I can be home with my children.  And when they no longer need me, who knows?  Maybe I'll work in a school for special needs children?  I would love to work in Early Childhood.  It has been such a blessing for our family. 

No matter what comes our way, I'm trying to be happy and confident in God's plan for our family.  Each step we take, I see His hand in our lives, and I'm grateful.

   

Patience

Every day is a new day...

There are days that still feel like nothing is wrong, and then there are days it is very clear that Aiden sees the world in a whole different way.  Lately, Aiden gets pre-occupied with having a certain number of objects; usually, it is the number 3.  He has to have all 3 elephants come to bed with him at night, and if he loses one behind the bed, he wakes up crying until I find it.  The other day he had a mini dog, duck, and pig that he had lined up.  The duck went missing, and it was like it was the end of the world for him.  He cried and cried and cried.  I searched everywhere for the little duck, but it was no where to be found.  I had to take Aiden to school over my shoulder, because he couldn't get over the missing duck.  He kicked and screamed for the "duck," and his teacher had to take him inside alone to calm him down.  While Aiden was in school, Austin and I went everywhere trying to find a new duck, but we were unsuccessful.  I was afraid Aiden would remember the event, and lose control again when he came home.  I hid the dog and the pig.  When I brought Aiden home, I quickly took the kids outside.  All was well.  The sad part was, if I had found the duck, Aiden would have been just fine leaving the 3 animals and going to school like normal.  I know this from experience with the elephants!  

These are the moments that are hard--the moments when Aiden's perspective gets disrupted with the unexpected, and he can't seem to function.  But, there are many moments of joy too.  Aiden is beginning to put words into sentences.  His first sentence was (clear as day), "more milk please".  It took 2 1/2 years for him to put those words together!  He also says, "here, have a ____" to his brother.  He shares very well :)  Aiden has many, many new words in his vocabulary.  He loves to sign, and he does it well.  He recently learned his colors, and signs them too!  The boys are playing so well together these days.  They both love to open books and point at pictures.  Aiden continues to sign and say almost all the animals.  I'm sincerely praying that Aiden finds his voice in the next year.  He is getting frustrated when he can't communicate what he wants, and I long to have a conversation with him...   

Aiden is a great blessing in our lives.  He is teaching me how to be patient, and I'm actually learning!  

                           Aiden signing "yellow" with Signing Time DVD's

Perspective

Some people come into your life for a reason, even if just for a short while...

We are very blessed to have my mom and dad close by, and we visit them often.  The boys love visiting with Grandma and Grandpa!  Our visits usually include going to a nearby park.  This time, my mom joined me with Aiden while Austin rested.  Mom and I were commenting on the age of a little girl whose Grandparents were pushing her on a swing.  I guessed she was about 18 months old, and I asked her Grandmother just how old she was.  That opened a door to the most amazing story I've ever heard, and just what I needed to hear.  She told us the story of her daughter, who she was visiting to help out after the birth of a second child.  Her daughter was born 3 months prematurely, and because they failed to protect her eyes from the light when she was born, she became blind.  As a mother of a special needs child, she went through the same thing I did when Aiden was diagnosed--fear, worry, wondering what is going to become of your child.  Her daughter overcame it all, and as her mother puts it, "she is living the dream".  She travels, sky dives, received a college education, and now teachs at the school for the blind.  She is married and has 2 children.  It took everything I had not to sob.  I told her how much it meant to me to hear such an uplifting story, and about my own son's struggles.  Ironically, she used to work with autistic children, and she gave me some good insight into teaching tools for Aiden.  But, more than anything, she gave me a new perspective.  Even if Aiden doesn't completely overcome this, he can still find happiness and success.  

Today, my testimony burns with the knowledge that our Heavenly Father knows and loves each of his children.  A moment later, and we would have missed that woman and all she had to offer me.  She was there for a reason.  I needed that comfort and encouragement, and God knew just who to place in my path...

Happiness

Happiness is going away for awhile, and having your son run into your arms when you return!

Dear Aiden,

Your father and I celebrated our 5th wedding anniversary this week!  We took some much needed time away, and your aunt Amy took good care of you and your brother.  I'm so grateful that you love her so much, and feel comfortable being in her home.  It was a blessing to have some time for just your father and I, but nothing could compare to the joy I felt when I came to take you home!  You ran into my arms and gave me the best hug I've ever received.  Then, you ran to your father saying, "daddy"!  You have no idea how much that meant to me.  

I cried for you today Aiden.  Your teacher and I were talking before you went into your classroom.  She said their are many parents who just want "someone else" to take care of their special children, and they do little with them at home.  That broke my heart.  I do want someone else to help me, but that doesn't mean that I won't do everything I can to expand on your knowledge.  You are picking up on sign language very well, saying more and more words on your own, and you even said your colors correctly today!  I'm so excited about your progress!  Your father and I talked a little about your life, and how it may be.  I think I'm still a little bit in denial.  I wish with all my heart that you could speak to me, and tell me how you perceive things.  My greatest hope is to have a conversation with you in the next year.  Nothing would give me more joy than that--nothing.  

You are starting to look like a young man.  You have a terrific smile and laugh, and you continue to show affection and love to those around you.  That is your most endearing quality.  We love you, and we are so proud of the progress you have made in such a short time!  Speech Therapy starts at the Waisman Center soon.  I'm hoping this semester will bring many, many more miracles in that regard!

All my love,

Mommy       

Success!

Life is good!

Today was Aiden's first day of school (orientation).  I was so excited to tell his Occupational Therapist about all the progress he made over the summer!  

Aiden is learning new words nearly every day.  A month or so ago I started doing some simple flash cards with him.  He got a little more than half correct (ball, cat, dog, etc.).  Now, he says them all...even the "harder" ones!  Aiden continues to love animals.  He knows most of them, and will even sign them!  He LOVES "Signing Time" DVD's, and as much as I don't want him to watch a lot of TV, it really helps him A LOT.  With that, me talking like a speech therapist all day, books, and Little Einstein DVD's, Aiden is "catching on"!  To my utter delight, Aiden is starting to speak in short sentences.  He used to pull me to the fridge, or shove the cup in my face when he wanted more juice or milk.  Now he says, "more milk please".  I cried the first time he said it.  And it didn't stop there.  Aiden asked me for "more popcorn please" just the other day.  I was a little heartbroken when I had to tell him it was gone.  My son said a sentence correctly, and I can't give him what he wants!  Tonight, while looking for Austin's blanket, Aiden handed it to me and said, "here".  That may not seem like a big deal, but for Aiden that was a giant step forward.  He is starting to respond to his environment, show more eye contact, greet other children (usually with a hug and/or a kiss), and speak more and more on his own (vs. echolalia-type speech where he just repeats the words).  

While all these things are a complete and utter miracle, I do know that it is still a long road ahead.  When adults talk to him, it is common for Aiden to "growl" and act unusual.  The other day at the store, Aiden was flat on his stomach in the middle of an aisle pushing a toy car back and forth.  Sometimes I wonder what other people think when he does those things.  I'm always grateful to see a familiar face who knows Aiden, and where he struggles.  I try not to use the word "autism".  I don't want Aiden labeled, and so, I let people think what they want, and try to stay strong during those times.  It hurts a little, but now I have tremendous empathy for mother's of special needs children.      

As with all things in life, there are good times and bad.  I'm grateful for an amazing summer with my children.  We did so much, and I hope--even in some small way--the things we did helped Aiden.  I did the best I could.  Now I'm grateful for some help with him--I'm going to need some serious help with potty training--yikes!

Aiden made this airplane all by himself.  He even used it as such!

Potty Training

August 12, 2011

I decided it was about time to introduce Aiden to the potty chair. 

The plan was all laid out.  I chose a day where we had nothing to do, so we could focus on pee.  Both children were going to be naked most of the day...potty chairs ready!  The rug was pulled off the floor, the potty chairs were side by side, and "Elmo's Potty Time" was ready to play.  The boys were stripped of their clothes and read the book "The Potty Train".  Aiden decided he would hold himself because he had to go, and it was coming out.  He would tinkle, hold it, tinkle, hold it...meanwhile I'm trying to pick him up and put him on the potty seat, and Austin says, "oh, oh he peed".  It was really quite funny.  Pee all over the couch and on the floor, and I'm trying to get my 3 and 1/2 year old to sit on the potty while my 20 month old gives me the play-by-play!  Needless to say, I was done with that after 20 minutes!  How do you potty train a child that doesn't communicate, and may not even feel when he has to go?

Plan B...    

I'm getting a seat that will fit in the toilet so Aiden can use that when he is ready.  He is way too big for the potty chair anyway.  I will encourage him to sit on it at certain times of the day--when he wakes up, before rest time, and before bath time.  It doesn't matter if he does anything.  It is the idea of getting him used to the potty.  Even though my 20 month old is ready, I think I'll wait awhile.  Aiden is going to take all of me right now.  I can tell this is going to take a lot of patience and hard work!  Bring it on!

Letter

August 6th, 2011

My dear Aiden,

You are now 3-1/2 years old.  I can't believe how quickly time passes us by.  The more I come to realize this fact, the more I let go of the things that aren't important, and cherish the things that are.  One of my favorite scriptures these days is, "seek ye first the kindom of God, and all else will be added unto you".  I know this is true Aiden; I've seen it in my life time and time again.  Miracles continue to happen.  We always have what we need despite our struggles.  You and Austin are my pride and joy.  I can't tell you in words what being your mother means to me.  Motherhood saved me from a deep depression.  I have purpose now.  I know you need a lot from me, especially now when your opportunities to learn are at their greatest.  I hope I'm giving you what you need.  God must have a lot of faith in me, because this is hard.  There are times of great sadness, and times of great joy.  I cling to every new word you say...every random sentence, and I pray that I can talk to you soon.  There are times I don't understand, but I'm trying.  It is hard to be empathetic when I've never had your challenges.  I'm learning empathy from you.  You are a very sweet and loving boy.  You comfort your brother when he is upset.  I love that about you.  The other day you ran 1/2 a mile non-stop, and I was so proud of you!  You have many gifts and talents Aiden, and I'm excited to see how they blossom and grow over the years.  I love you just the way you are--sweet, handsome, and energetic!  I'm grateful to be such a big part of your journey.  

All my love,

Mommy

Autismom--Thank you so much for taking the time to read this blog, and to give me feedback!  For some reason the blog will not let me respond to your messages!  I read every one of them, and I appreciate your experienced insight!  My email address is mccormickmarian@yahoo.com.  I would love to be able to reply to you!

Fun Therapy

Things we do on a daily basis for sensory fun!

Please share any other ideas you may have...

* Play with playdo/silly putty/bubber (bubber was so messy we ended up taking it outside)!

* Bathtub foam (you can buy this, or use shaving cream--the kids LOVE it)!

*Climbing wall (we are blessed to have one right across the street at Aiden's school).

*Slide--Aiden loves to climb UP the slide, and I have no problem with that!

*The mall's balance beam--Aiden is a PRO at this :)

*Swing--Aiden's favorite activity in our backyard!  I use a lot of words when I push him, and he is catching on!

*Sit N' Spin--Aiden did it on his own the first time!

*Hand painting--Aiden loves to paint his hands and make pictures...Austin too!

*Blanket rides--the boys LOVE this activity!  I pull them all over the house on a blanket!

*Pillow fight/pillow sandwich--LOTS of laughs from both boys with this one!

*Touch/feel books (I need to make another trip to the library)...Aiden is really getting into books now!

*Bean bin--Aiden likes to find the objects in the beans; this is a great way to teach him words too!

*Rollarcoasters/carnival rides--we were blessed to take Aiden on his first rollarcoaster this year, and to the local Fair!

Speech Therapy

A door opened for Aiden...there is a free program at the Waisman Center for children who have difficulty with speech/language.  Aiden will start this in September.  That means he will have at least 1 hour of speech therapy 5 days a week!  I'm so grateful!  Aiden is making slow gains in this area.  I try my best to talk often, but I'm really "out of my element" in that regard.  There is only so much "labeling" and story telling I have within me.  He still has trouble asking for things (he usually pulls me to them), and he doesn't respond when I encourage him to use his words.  I'm trying to give Aiden choices as much as possible, but he doesn't seem to understand the concept yet.  I'll keep trying...

Waiver Program

July 13th, 2011

I signed all the paperwork today, so Aiden is offically on the waiting list for the Waiver Program.  The wait is 1-1/2 to 2 years to get in-home therapy, but this is our only option left.  To pay for it out of pocket is 40,000 a year!  Mercy Options was a total let down on Monday.  They basically said that insurance doesn't cover their services, so I was wasting my time.  The poor lady.  I could tell she could feel my pain and sadness.  "I'm sorry I don't have better news for you."  "The best option is the Waiver Program."  Aiden will be 5 years old before he can get any therapy beyond the speech and occupational therapy provided by the school system.  I have every hope--perhaps naively--that Aiden will be speaking and potty trained by that time.  I'm not sure what else intensive behavior therapy can do for him beyond that.  I guess we will see what the next 2 years brings!  In the meantime, I'm it until September, and I'm going to do everything I can to encourage and love my son!

IEP

Aiden's IEP--Individualized Education Program Assessment

4/15/11  (age 3) "Talk-n-Learn" Assessment:

"Expressively, Aiden's skills are typical of a child at the 16 month level while his receptive skills are typical of a child <12 months of age.  Aiden uses approximately 15 words."  Ms. Jimenez

Fine Motor skills: 24 months

Cognition: 17-36 months (Aiden was unable to complete the LAP-D assessment due to his inability to follow directives or answer questions).

Adaptive/Self Help: 15-19 months

Social: 12 months

Gross Motor: 27-29 months

My assessment?  The above means nothing to me.  I'm just curious how these change over the years.  From my daily assessment, Aiden is functioning at a 16-19 month level (i.e. 2 years "behind").

Aiden receives a new IEP July 13th! 

July 13th 2011~
I spoke with Aiden's speech therapist today.  She was very encouraging!  She was impressed with Aiden's progress and the goals he met!  I expressed my concern that Aiden will not receive therapy for a month and a half until Early Childhood in September.  She agreed that Aiden needs constant reinforcement.  I need to talk to him constantly, and label things.  I feel "out of my element" doing so, but I'm trying hard!

Sensory "Diet"

Marian McCormick, RD (Registered Dietitian) becomes OT (Occupational Therapist) 

I've used some of the OT's suggestions from the seminar that I went to, but I need more ideas to create my own program at home.  I'm currently reading, "The Out of Sync Child has Fun" from a friend who also has an autistic child (age 12).  There are some fun ideas in there!  I will post some of the activities we do as I learn more!  I'm sure they would be fun for any child with or without sensory dysfunction!

Aiden seems to NEED more stimulation.  He loves to jump, run, and swing!  I'm not sure about spinning...indeed, do they still make the "sit n' spin"?  He no longer sucks on everything--thank goodness.  His "new" thing is pushing and dropping his stuffed animals over and through things over and over again.  If he plays with a toy it is usually a bus, which he pushes back and forth while he lays on the floor.  Mainly, he does repetitive things with his stuffed animals (right now it is 2 elephants and a bird).  If he loses 1 of those, it is awful!  He needs to have all 3! 

I'm hoping camping, Six Flags, trips to the park, daily walks, and playdates are helping Aiden.  I am a very active person.  We do a lot of outdoor things, and he seems to enjoy them.  There was only 1 time recently that I noticed Aiden didn't do well with his environment.  We were at a crazy gas station--4 different food places were inside, a lot of different "things" every where.  Aiden hid under the table.  Later, he took my hand and pulled me to the car.  Weird.  That never happened before.  Too much I guess...

On a positive note...

Aiden seems to be responding better to conversation and he is making more eye contact!  I notice this especially when he comes home from school (where he gets occupational and speech therapy).  Today, I went to pick up Austin (Aiden and I went to swim lessons together), and I told Aiden what I was doing.  He said, "Austin"!  Did he understand what I said?  Encouraging!  I know the therapy is helping Aiden, I just hope I have the right tools to continue to give him what he needs.  I'm anxious for his appointment next Monday!   

                                                    The Madison Zoo

WEAP

WEAP--WI Early Autism Project

Initial Assessment June 30, 2011

Tired of waiting for our appointment at Mercy, and losing my patience with the Waisman Center (total waste of time), Aiden finally got a diagnosis today at the WEAP Center.  Aiden was diagnosed with PDD--NOS, pervasive development disorder not otherwise specified--a "label" on the autistic spectrum.  He qualifies for services (minimum of 20 hours/week), but the wait for the "waiver program"--meaning we wouldn't pay for services out of pocket--is a year or longer.  Very sad.  The one thing that everyone can agree on in regards to autism is EARLY INTERVENTION is KEY, and yet, my 3-1/2 year old waits once more.  Even if I went back to work full-time (which isn't going to happen if my life depends on it), we couldn't afford to pay for his therapy.  My last hope at this point is Mercy Options.  If nothing else, I've learned enough from Aiden's speech therapy to develop a speech program on my own.  The sensory stuff?  Not a clue!  I'll just pray that Aiden doesn't regress before Early Childhood begins again in September.  Summer school ends mid-July...

How do I feel about this?  Disappointed, frustrated, and sad that I can't get more help for my son.  

Thank you

A note of many "thanks" to those who take the time to read this, and help in any way that you can.  I appreciate your comments so much.  Thank you for inquiring about Aiden, and listening to my fears and/or frustrations.  We all have our challenges in life.  The grass is never "greener," on the other side, it is just different.  I took Aiden to swim lessons the other day, and I quiety cried at the pool-side.  This was a class for "special needs" children.  I cried because Aiden's diagnosis is slowly becoming a realty.  Later, Abe asked me if I noticed the little girl with the trach tube--she was about 2 or so.  Sadly, the answer was no.  I didn't see her, because I was too busy feeling sorry for my son and I.  I realized then that we were very blessed, and my attitude and perspective needed to change.  It could be much harder.  My heart broke for the children who will struggle their whole lives, and the parents that love and support them through their journey.  I pray that we can lift each other up, accept and love one another for our differences, and truly support one another.  I know that many may not agree with what I write on here, but I've chosen to share it in hopes that it will uplift and inspire someone else.  It helps me so much. Sometimes, we go through life focusing on our own trials and shelfish needs (myself included), but we find ourselves when we are in the service of others.

Decisions

June 26, 2011

Abe and I will be married 5 years in September.  Each year, we take a picture of our family around Christmas time.  Last years photo is hung above our kitchen table--Aiden nearly 3, and Austin age 1.  I look at that photo, and all I see is a child missing...

When Austin was about 9 months old I thought "I can do this again," and I felt a twinge of excitement to have another child.  Yet, I waited for many, many reasons.  Then, shortly after his first birthday--near Aiden's diagnosis--I knew that our Heavenly Father has another child for our family.  This time, it wasn't excitement that I felt.  It was dispare.  Raising 2 young children--22 months apart--is very challenging.  To put a pregnancy on top of financial stress, pre-existing exhaustion, an increasing awareness of Aiden's struggles, and my own struggle to cope...it would take a lot of faith.  How do other parents do it?  My mother is the baby of 12 children (one of which is autistic), and I am amazed by her mother's faith and strength.  Maybe it is through significant adversity that we find our greatest strength; yet, we have already been through so much.  Much more than I will share in this blog.  Let's just say, I'm desperate for a year of prosperity and peace--not adversity.  Harse to think of another child in that regard, yes, but I'm so scared.  Austin talks more than Aiden does, and I still have some problems with Aiden running away.  It is almost like I have 2-18 month olds, and that is hard--very hard.  Who knows what Aiden's future holds?  Potty training...not even close.  Speaking in sentences...that would be a miracle.  What happens if Aiden doesn't adjust to the change?  What if I can't find balance between the 3?  And so on, and so on...

And so, I wait again, but each day the thought is there, and the picture haunts me...

Progress

Yesterday was Aiden's last day of Early Childhood for the summer, and I cried.

As I walked away from Aiden's teachers and said, "thank you so much" and "goodbye, see you in the Fall," I cried.  Aiden loves his teachers.  He will give me his dinosaurs that he clings to, and run to give a teacher a hug--happy to start his school day and say "goodbye" to mom for just a moment.  I'm so grateful that it isn't a fight to get him to go.  In just a few months in EC, Aiden made so much progress!  This year, they learned about animals.  To my surprise and joy, Aiden SAYS quite a few animal names--on his own--with just a book to prompt him.  He even makes some animal noises!  His adorable, sweet voice is music to my ears!  He still repeats like crazy, but it is speech, and I'm so happy to hear him gain some words of his own.  

There are times when I see Aiden and Austin running and laughing together, and I think--nothing is wrong.  Then there are moments, especially with other children, that Aiden will stand or sit in a corner playing with a stick or random object for hours instead of joining in on the fun.  That makes me sad.  He lays on the floor a lot too, in public and at home.  He has a "shreek" that he does at random for no apparent reason.  He doesn't seem angry, upset, or unhappy at all.  He just "shreeks" at random.  On a positive note, Aiden is starting to repond more and more to me, and he is running away much less!  He was perfect at the grocery store yesterday, and I had a glimpse of what could be.  He pushed his own cart, and stayed by mom--wow!  He listened, and followed.  I was overjoyed, and so proud of him!

I know Aiden could be much more severe than he is.  I'm grateful I don't have to see my son sit in a corner all day, with no verbal or non-verbal communication.  He loves to go places, and he transitions very well.  The only time I noticed that he couldn't handle the break in our routine, was the night I left him with my sister-in-law overnight.  BIG MISTAKE.  The following night, Aiden screamed all night long--literally.  He will start summer school in a week, and I'm a little nervous to change his routine, but I think he will do well.  Let's hope he likes the bus!      

We have an appointment at Mercy on July 11th, and hopefully, we can start some in-home therapy again!

Books

"Let Me Hear Your Voice.  A Family's Triumph Over Autism"

by Catherine Maurice

I've read a lot of information on autism--some good, some bad, some downright made me angry and upset.  I've turned away from "medical opinions" for a moment to read this book.  It is about a mother who fought for her family, and won the battle against autism.  In just the first few chapters, I feel like I'm reading about my own experience.  The denial, fear, and final acceptance of the diagnosis were the same.  At the time of her daughter's diagnosis, in the 1980's, things were much different than they are today.  Hope is out there.  Some autistic children function at levels that were never anticipated back then.  She was told to seek help for herself, but never for her children.  This was just something that happened, and there was no hope for progress.  I'm grateful that autism research has come so far, and Aiden has already been through some great programs.  I see positive changes in him.  They are gradual, but there, and I have hope with each new day. 

 

Prayer

When there is nothing left but God, you find out that God is all you need.

Prayer is, and always will be, a daily source of comfort for me.  I will always remember my grandmother as a woman of faith.  She woke up early every morning to pray, and she was always there to help others.  I hope I can leave that legacy behind for my children and grandchildren as well. 

Today, Aiden SAID his first prayer.  I folded my arms to pray with the kids before dinner, and he said "Dear Heavenly Father, thank you for this day" before I could utter a word.  I was so proud of him.  He may have repeated what I have said in the past, but it was a connection, and it gave me hope. 

Diagnosis

Doctor Appointment~May 31st, 2011

I met with the boys' doctor today for Austin's 18 month well check.  He is doing great!  He is short and thin with a big head, and all is well ;)  Thank goodness! 

The rest of the appointment was a discussion about Aiden.  I told the doctor that we were unable to get an appointment with the Pediatric Neurologist, and we are still on a "waiting list" at the Waisman Center so he can be "officially" diagnosed.  Without that, I cannot pursue further help for Aiden.  He will do summer school, but that ends mid-July, which means he will receive no speech or occupational therapy for the remainder of the summer--NOT okay!  The doctor was surprised and said, "I'm operating under the assumption that he already has that diagnosis."  Why can't anyone say "your son is autistic"?  I honestly still had "maybe that isn't it" in the back of my head.  So now it is time to move on.  Aiden is autistic.  This isn't me being "dramatic" or Aiden "being shy".  This is Aiden needs more help than I can give him at home right now.  In my heart, I already knew that. 

What is next?

Aiden's doctor is looking into a new program at Mercy.  They work with autistic children in their homes.  I pray this is the answer, and Aiden receives a good therapist who works well with his personality.

Moments

Just when you think you are coping well...

It wasn't the little boy who made fun of Aiden when he wouldn't play with him at the park.  It wasn't the little girl who asked her mother, "why won't he talk to me?"  It isn't the fact that Aiden can play in a box or the dog kennel for hours, or sit in a pool playing with tree "thingees" for almost 3 hours.  It isn't any of those things.  The moment came shortly after Aiden and Grandma were playing, laughing, and running after each other.  He loves her.  He even says "Grandma" and runs to the door when we arrive.  He knows her home and her love for him.  Grandma was saying "goodbye" and "I love you" after a fun-filled day, and Aiden just stared straight ahead.  No expression, no smile, nothing.  My heart broke at that moment.  The feeling was so deep; I didn't even know how much all of this was still affecting me until I felt it.

Abe and I sat down yesterday and talked about Aiden for the first time.  I didn't realize how much this was affecting him as well.  I wear my heart on my sleeve--he doesn't.  My heart broke for him.  I thought for a moment I would see him cry for the first time.  I'm grateful that we can endure this trial together.  

My brother was misdiagnosed with Cerebral Palsy when he was young.  He didn't walk or talk until he was 4 years old.  My mom still talks about the  miracle when Paul WALKED into the kitchen and SAID, "what are you doing?" for the first time in his life.  That miracle will come for us too.  It may not come in one day, but it WILL come.  I have complete faith that Aiden will one day be held back only by his own desire and will, not by his inability to communicate.  

I love my family more than my own life.  I'm grateful for them.  I'm grateful that we have each other for support through the good and the bad--no matter what comes our way.

Austin & Aiden

Nothing in life can hold more joys or more tears, can make you more proud or more tired, or give back more rewards than being a mother.

Aiden's little brother Austin will be 18 months old in just a few days.  It is amazing to me what a child can learn, understand, and do in as little as a year or 2.  I'm grateful that Austin talks, interacts, and loves to read!  This is all new to Abe and I!  It is clear now, that Aiden struggled with developmental delays after the first year of life.  Although it is sad when our 18 month old interacts with us more than our 3 year old, there is still a feeling of peace that Aiden will get there too.  Aiden seems to understand and respond more.  He doesn't run away nearly as much as he used to (thank goodness), and he is saying more and more words.  He is still working on communicating.  When I ask Aiden about his school day, he doesn't look at me or respond.  He seems to love Early Childhood classes (evidenced by his teacher's notes), especially music and gym :)  I'm so grateful for the program and his teachers.  It seems to be helping a lot.  Aiden will start summer school soon, and we even get to do swim lessons together!  I'm looking forward to some "Aiden and mommy time".  Austin will get plenty of "mommy time" too when Aiden's class schedule changes. 

I'm grateful for my children.  I was at the park the other day--just me and the boys--and I just stood there "soaking it all in".  I've never felt so much love or joy!

   

Faith

Today, I'm exceedingly grateful for the one constant in my life--faith.  

Sometimes, I feel defeated, scared, discouraged, confused and overwhelmed by what life brings.  A speaker in church said something a couple months ago that stuck with me.  "Are you willing to put our Heavenly Father in the driver's seat?"  Am I?  I think I have in many, many aspects of my life.  Baptism, marriage, and having children are 3 of my most cherished blessings--gifts from following the spirit.  

Each Sunday I'm reminded of what is most important, and the happiness and joy that comes from living by faith despite my day to day challenges.  For me, it is much easier to let the "ways of the world" defeat me, than it is to put all things in His hands.  I need to remember that He didn't do it all in one day, so why do I think I need to or even can?  I pray that I will not get discouraged during this journey, but always remember there is GREAT purpose and meaning behind our struggles.  Aiden's baby blessing says, " you will have many trials to overcome."  His trials are different than mine.  They are for him to experience, so he can grow in faith.  I pray I can help him along his journey with our Heavenly Father's direction.  I know he is my baby boy for a reason.  I also pray, that Aiden meets people with the patience to help him overcome his sensory challenges, and he learns to communicate effectively.  One day, this heartache will be filled with incredible joy.  What a blessing it will be to have a conversation with my son!

And the answer is yes, I am willing to put Him in the driver's seat.  I've seen too many miracles in my life to deny His presence and eternal love for His children. 

GFCF

Another controversal topic...

The more research I do, the more overwelmed I get by all this.  Among all the theories, alternative therapies, and research there is an answer somewhere.  Autism is a highly researched area, and I hope someday they find solid answers.  I've determined that we have to find the right answer for Aiden and our family.  It doesn't matter what others have found to be helpful.  I need to find what works for my son, and what will ultimately give him the best quality of life.  Right now, I believe he needs more speech and occupational therapy than he is currently getting.  I'm working on that.  I'm trying to get Aiden in to see a Pediatric Neurologist (instead of waiting for the Waisman Center).  With a confirmed diagnosis, it sounds like he can get in-home therapy 20-30 hours a week.    Yesterday, I met a mother with a 5 year old son in the same programs as Aiden, plus in-home therapy.  At age 4 he was potty trained and communicating!!!  I have high hopes that Aiden will be too :)

Sigh...I've done a lot of research in peer reviewed journals, and on the internet about the GFCF (gluten free, casein free) diet.  More research is needed on this diet.  So far, it remains controversal.  I've talked to teachers, occupational therapists, and a dietitian who work with autistic children.  They all say the same thing.  It works for some children. 

The "leaky gut " theory says that some people don't digest proteins appropriately; in turn, intact proteins go into the blood stream, cross the blood-brain barrier, and cause cognitive problems.  Many people feel that autistic children have digestive issues, and try to solve them with diet*.  Also, eating gluten seems to have an opiate response for some people--just like a drug.  This is my field.  I understand how the body digests and absorbs nutrients.  So my question is, why is it just dairy and grains that cause problems then?  Why not meats, which contain more protein than grains, and the same "complete protein" as dairy?  Honestly, I hate the diet.  As a dietitian, this diet can be very low in calcium, vitamin D, B vitamins, and fiber unless you sub healthy alternatives, which are EXPENSIVE!  For our low income family, this diet would exceed our budget.  Also, Aiden's diet is already very limited due to sensory issues with foods.  My final concern--eating at school, grandma's, and birthday parties would take more planning and effort than I can handle right now.  So, for now, I do my best to give Aiden the nutrients I know he needs.  I give him 3 food groups at each meal, including a protein each time.  I offer healthy snacks and limit sweets and processed foods the best I can.  I don't want to cause disordered eating behavior by restricting him too much (both my mother and I had eating disorders).  Who knows what I will try in the future.  One thing I do know.  A GFCF diet will not "cure" my son.

*I will note here that Aiden never has digestive issues--diarrhea or constipation.  His skin is perfectly clear, and he is very rarely ill.  I have no concerns in that regard.   

Journal

Journal entries~Birth to 3



August 25, 2007

To my son:

I’m now 18 weeks pregnant with you right now.  This week we found out you are a boy!  So far, we plan to name you Aiden Bradley (after my step-dad) McCormick.  I’m overjoyed!  It was the most amazing blessing to see your little fingers and toes on the ultrasound.  It almost doesn’t feel real that 5 months from now you will be in my arms.  I’m still waiting to feel you move in my tummy—the doctor says that will happen soon!  Your father and I felt like it was the right time to have a baby, and we were blessed to get pregnant with you right away!  I’m giving up my job as a dietitian to stay home with you.  It will be a financial trial, but I know our Heavenly Father will bless us for doing what is right.  I’m grateful to Him for blessing me with the gospel so that I may share it with you!  It has blessed my life, and I pray you let it bless yours too.  I love you very much sweet baby boy, and I will do everything I can to be a good mother.

All my love,

Mommy

January 18, 2008

Wow how time flys!  I only have 1 week left until Aiden’s due date—January 25^th!  I’m so excited and a little nervous about the delivery.  Our whole world is about to change drastically.  I’m so ready.  This last month and a ½ has been very uncomfortable.  Aiden dropped just before Christmas, so I have to go to the bathroom every 10-20 minutes and it gets uncomfortable walking for long periods of time.  I toss and turn at night to try to get comfortable, which is hard on Abe and I.  I guess we are being prepared for Aiden waking us up every couple hours to eat.  Overall though, I have been blessed with a great pregnancy!  I had so much energy my second trimester and I wasn’t uncomfortable at all. 

June 4, 2008
 
Aiden is a blessing.  I never knew a mother’s love until now.  I don’t think I could ever love anyone as much as I love my son.  Sometimes I look at him and I want to cry.  He is beautiful and such a joy.  In the mornings (ok 5:30, 6:00 AM) he is so happy.  Kicking and smiling with joy he looks up at me with the most beautiful eyes.  He is growing so fast.  He is eating cereal now and getting so strong (he loves to pull my hair).  It was the highlight of my day when he took cereal for the first time.  I’m glad I don’t have to miss Aiden’s milestones.

November 15, 2008

Aiden is a joy.  He finally started sleeping through the night at 8 months old!  He is now 9 months old, soon to be 10 months…He has changed so much.  Crawling, smiling, laughing.  I adore him!  I haven’t missed a thing and I’m so grateful to stay home! 

March 13, 2009

Aiden continues to be my greatest blessing.  He is walking now and learning so quickly!  I’m trying to teach him sign language, but so far I’m the one learning!  I hope he catches on eventually.  He is sleeping 10 hours a night now, but still wakes up occasionally.  Life as a mother has become much easier now that I can get some rest! 

April 11^th, 2010

Yah Spring!  I forgot how much the weather improves my mood!  Aiden is 26 months old now, and I have a 4 month old.  It is surreal.  Aiden is very challenging these days—terrible 2’s is right!  He is in speech therapy, and still not making much progress.  He hits me all the time, and is constantly bored.  Aiden needs a friend desperately.  How to find a balance that works for Aiden and I? 

May 29, 2009

Aiden- is now 28 months old.  This month his speech really took off!  He has been in speech therapy in the Birth-3 Program, and we are finally seeing some progress.  He seems to understand more, and mimic a lot!  He even tries to sing with the songs on his movies.  He hugs and kisses his little brother and says, “wuv uw”.  It is endearing.  Aiden loves to play with balls.  When we go for a walk, the stroller usually has a ball in it!  He is a very active boy, and he LOVES to run!  I’m happy about that, but it also scares me that he would run away from me.  He is a very picky eater, but he seems to be eating a better variety these days—thank goodness!

July 6^th, 2010

Aiden—is changing so much now that he is nearly 2-1/2.  He is speaking a little more, and seems to be understanding and interacting a little more too.  I’m waiting for the day he just talks like it was never an issue.  He loves to play with Zach and is much more into water play than last year—he really loves the pool!

March 18, 2011

Aiden—is 3 and finally starting to talk.  He has a long way to go, but the progress is encouraging.  I’m desperate for him to go to school for ½ days, and we are working on that.  Hopefully he will start Early Childhood soon.  I need a break, and I feel like he needs what I can’t give him.  I’m just not the person to sit and teach him.  I don't sit and do--I go and do.  I’m sad that I can’t focus more on working with Aiden, but I also realize that is not my strength.  I really want Aiden in school for a much needed break (he is very difficult), and for him to progress in the area of speech and language.  He is going to be assessed at the Weisman Center for further needs.  I’m wondering if he is autistic or has ADD.  I’m not sure how I feel about that, but I just want to know for sure so he can get some help.

April 15th, 2011

This blog was created to journal Aiden's progress and the things I learn along the way.