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.