Saturday, April 18, 2009

We have begun a new journey...

February 16 we began a new journey...Cole was diagnosed with Autism. This has brought lots of change into our lives. One of the biggest change is trying hard to take one day at a time. I am trying hard to put my faith in the Savior that he will lead me and guide me in this journey.

It all began in September 2008 I started to feel like something wasn't quite right with Cole. I took him into our pediatrician and told him I was concerned with Cole and some of his behaviors. A few were: he struggled with his peers, lined his cars up and that something just didn't seem right. Well he did a few things with Cole and said, "I don't see anything let's keep an eye on him and talk again at his 3 year old check-up in November." I was fine with that. Well November came and the feeling that something was not right with Cole and we needed to find out what it was. At Cole's 3 year check-up our doctor saw a few more of Cole's behaviors (no eye contact, speech delayed, I told him that he was a horrible sleeper up 2-3 hours every night in the middle of the night, picky eater, stopped using his fork and spoon, speech seemed to be delayed, wanted to play alone when with cousins, repeats things over and over, licks hands, runs around our island over and over, etc...), but still not to alarmed. Erik went with me and helped me describe better some of the behaviors we were seeing. The doctor gave us a referral to some developmental pediatricians to have him evaluated, "saying it takes months to get an appointment that we should make one and then if we decided that we didn't think it was necessary we could cancel."
The holidays came and went with much frustration. Taking Cole anywhere was a nightmare. His first day of Sunbeams was almost his last (a story for another day). I began calling several of the referred doctors. The response I was getting was we aren't making anymore appt.'s check back in 6 months or we are 6-9 months out for an appointment. I was so frustrated. Of course, pleading with the Lord that we had to be seen soon. Our prayers were answered and we got an appt. at the Melmed Center in Scottsdale set for 2 weeks later. Within days I received a packet full of questions about Cole and his behaviors, health, etc... We spent 4 hours filling them out and sent them back so they could review them before our first appt.

Monday, February 2, Cole, myself and Oma went for our first appt. at the Melmed center. For 2 1/2 hours we meet with Dr. Bilog (developmental pediatrician) answering questions, testing Cole, watching him play, and answering even more questions I left there emotionally drained. Set up an appointment to come back 2 weeks later for more testing and an 1/2 hour of discussion of what the dr. was leaning toward as a diagnoses for Cole. From the first appt. to the final written report it took a month and Cole was officially diagnosed with Autism.

Woe, that is a lot to take in. I spent several days/nights with lots of emotions. Luckily for us we have an amazing support group, our family and amazing friends. First and for most I knelt in prayer asking Heavenly Father to help me and Erik. Very quickly he sent angels to help us. A wonderful primary president Laura Richins, Peggy Peterson (Cole's one on one adult friend in Sunbeam class), Kaylene Barrus (my cousin who has an autistic son - that I totally admire), Ally Crandall (a cousin full of advice and info.), Heather Solomon (a dear friend), Moe Edwards (a dear friend with an autistic nephew, she took me over to see how his amazing mother as helped him be successful), Wendy Brimhall (set up a park day with her friend Heidi who is an Autism Specialist), my family, Erik's family and Erik who went with me to the temple where we felt peace. Let me tell you there have been so many angels sent our way - some through anonymous notes sent with encouraging words, to dear friends who insisted on bringing us dinner, to my mom seeing my need to get away and dropping her plans to go with me on a quick weekend trip to Utah, to my sister LaSchelle opening her doors to a much needed get a-way, to sisters and sister-in-laws and brothers who have just been there to listen. I have already met some amazing people and have experienced several tender mercies (in which one day I will share).
Where we are today:
*Cole attends an early intervention preschool 3 days a week for 2 1/2 hours "Little Coyotes"
including him there is 7 kiddos in his class with 3 teachers
*we have an ABA therapist coming into our home every other week
*DDD approved (that is the state program that has no money to share)
*waiting for the federal program to come out and evaluate Cole - hoping for some funding so we can have some therapist come into our home
*Weekly occupational therapy (Fiesta Pediatrics)
*Weekly speech therapy (Fiesta Pediatrics)
*Signed up for a 5 week Jump Start program at SARC for this summer
*Trying to organize a "social" group
*planning weekly thematic units to help Cole develop more language
*I am reading every minute I can trying to learn more about Autism and what I can do to help Cole
*Will attend my first Parent support group next week
*Cole goes to Sunbeams without crying with Sis. Peterson
***trying to enjoy our journey with Cole each day with a cheerful heart...

13 comments:

linda crandall said...

Oh Lori, I know this is and will be an emotional and spiritual journey for your family.

I want you to know, as I have watched Kaylene and her family go through this, that you and your family are special and choice spirits that were chosen to raise such a sweet little angel :)

The journey wont be an easy one, but with your amazing spirit and faith in the Lord you will not only be able too endure, but will be greatly blessed.

Larissa said...

We love our "Coleman". We are so glad he has a special family with amazing patience, energy, love and faith to help him. He will have much success due to his special family.

LaSchelle and Kurt said...

He has the perfect mom! We love you and your sweet family and know the Lord will bless you all.

Patrice said...

Lori, this life sure can throw us some loops! I am so very thankful for the knowledge of the eternities and our loving Father in Heaven who sends all the help we can possible manage.

Even with that knowledge, there will be days that you may just want to lie down and take a nap. Please call me so I can watch the kids or help in some way!

We will pray, too, and are always there if you need to talk. We truly all have our struggles, and know how it feels to need to vent or just be understood!

Marilyn said...

I pray the Lord will be with you. I knew also that there wasn't something quite right when Daniel was little and going to preschool-that he wasn't learning as he should. We were so blessed along the way with great teachers. The Lord will bless you and guide you and help you along the way!

Kassi Jane said...

I cant even imagine what you are going through but i do know that getting to know you through your blog that you are a great mom and you have lots of faith and that you and your family will be blessed and you will all be okay. seriously though we love you guys!

Kaylene said...

Lori,
This is part of a poem by Erma Bombeck about mom's of special kids. It is a conversation between Heavenly Father and His angels about which children he will send to which woman and what "patron saint" he will send to help her.

"Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

My heart goes out to you and your family. You are embarking on an adventure that will challenge you, and even threaten to break you. But most of all it will show you how wonderful our Heavenly Father and Savior are. I promise you that they know you - and Cole - personally and know all that you are going through. They know exactly what you need, even before you ask. They will never leave you.

Cole is so blessed to be a member of your family. And you truly are blessed to be his mom. These special kids are noble and valiant spirits. Dont' ever forget that. Heavenly Father has entrusted you with a very special little boy. And, He has complete faith in your ability to help him with his challenges.

You're awesome! I'm so impressed with all that you are doing for Cole. Please, don't hesitate to call me - anytime. I'll help you anyway I can.

Allyson said...

What an amazing person you are! You have accomplished so much in such a short period of time! I'm glad to see that things are rolling along. Keep your chin up. He sure is a cutie...we should get the boys together sometime. I love you! Let me know if I can help in any way.

kristie said...

Lori--thanks for sharing your story. He definetly has been put in the right family. You seem to be a lot like Kaylene, willing to anything you can to help your child.

You mentioned doing weekly units with Cole. I have come across a whole network of blogs that are for homeschooling. They have some fun ideas for working with toddlers/preschoolers. They have activities for learning ABC and counting, sequencing, reading, fine motor skills, etc. If your are interested, let me know, I can get the link to you.

Addy said...

We can only imagine what you're going through - daily and emotionally. Cole is lucky to have a mom who has the training that she does. Our thoughts and prayers are with you... and if you ever need to have a play date, give us a call.

Rydgd said...

Lori - it was so great to talk to you on Sunday. I wish we'd had longer to catch up. I look at the picture you have posted of Cole - what a gorgeous little dude. I know you will have your challenges. I also know that you can meet and beat those challenges. You're one of the strongest people I know and Heavenly Father will keep sending you angels!! And I know you will continue BEING the angel that you have always been to others. We love and miss you all!

Wendy said...

I know there have already been a lot of comments made and I can't add any new words. But please know that I love you and I know Cole has the best family ever to help him through his autism. Not just you, but each one of your kids and Erik were placed here to help him and he was placed here to help you guys learn as well. What a sweet family you have.

Joyce A said...

Dear, dear Lori, I am so impressed with your humility and your ability to see Heavenly Father's hand in sending "angels' to help you and to bolster you and your family. I am so thankful that there are programs and support groups for you, too. I love you and your family!! Hang in there. Aunt Joyce