Our Family's Journey Through Autism And The Untold Beauty Of It. Megan is an amazing child with autism through her we have learned the beauty of autism.

Friday, March 23, 2007

The Diagnosis

Shortly after Megan had her first birthday, we started to notice that she wasn't yet making Mama, Dada sounds, and it appeared that she couldn't hear us! We could walk up behind her clap, stomp, make loud noises and she wouldn't turn head. So I took her to the family Dr. and he sent us for a hearing test, and a visit to the nose, ears, and throat specialist. First was our appointment with the specialist, she stomped, clapped, and made loud noises, Megan didn't even flinch! She examined her ears, not an easy feat for a child who won't let strangers touch them! After examining her ears, she determined that everything looked normal, and we should not only have a hearing test, but also an ultrasound of the inner ear. So off the the audiologist we went.

Once we had the ultrasound and hearing test completed the audiologist sat down with us to explain the results. Megan has better then average hearing, she can hear sounds and frequencies that most people can't, a very heightened sense of hearing, is what we were told! What?!! All this time she could hear me and choose not to! Oh my, my daughter didn't care to interact with me! That hit home really hard, what had I done wrong, why didn't she love me, these were some of the first thoughts I had, mind you they didn't last long but, it still hurt no the less. Megan was always very affectionate with me, always wanting back rubs and hugs, thankfully we did have a place where we could meet and just be.

So now we had to figure out why she didn't want to listen or verbally interact with us. Because Megan had always been very loving towards me, made eye contact, and progressed at a normal rate Autism never crossed my mind, until.......... One day my mom was over visiting and thought i should look up the symptoms of Autism, she worked with a man who had Autism, and she thought that Megan shared some of the same traits, he had. So off I went to my bible then "What To Expect in The Toddlers Years" it had a few paragraphs about Autism, pretty vague really. It mentioned things like, resists eye contact, rocking, lining up of items. It didn't really seem to fit for me, Megan looked me in the eye.......just me not anyone else my mom said Megan doesn't rock...... but she did bounce across the floor on her back.....Megan doesn't line things up.....she just reorganizes......no she lines things up my mom said, and she was right.

So I made another appointment with our Dr. to discuss the possibility of Megan having Autism. During our appointment the Dr. stated he didn't really know anything about Autism, and would send us along to the Pediatrician. At this time Megan was about 18 month old. So off to the Pediatrician we went, after reviewing Megan's file and examining her, she thought Megan did indeed have Autism, but did not want to make the diagnosis herself, so she sent us to a Dr. who specialized in Autism.

So off my mom, myself, Megan and her sister Stephanie went to see the specialist. Yep her Dad had no interest in coming along! Although he did take the day off work to play video games.... OK I can admit a little bitterness here! The appointment lasted a half an hour, he watched her play, in a room the had set up, he watched her interact with her sister, he examined her, and then watched her interact with me. He said it was unusual the way she interacted with me, most he had seen wouldn't interact to their parents. BUT......... based on everything he had seen, she had Classic Autism, Moderate..............CRASH the sound of my world coming down all around me, stunned I sat there while he explained, ABA therapy, speech, preschool......and so on. He explained that with ABA therapy they had made great advances in reaching children with Autism, the only problem it wasn't covered by medical, and you had to fly a behaviorist consultant in from California, to train a team to work with her, now we live in Canada! Cost to run this program $60,000 a year! So now there is a program that works but I can't afford it....... I have never felt any smaller as a parent then that moment. Just as we were leaving the office, he said on more thing, and I have carried this through the years, and shared with many parents of newly diagnosed children. He said " GO HOME AND MOURN THE LOSS OF THE CHILD YOU THOUGHT YOU WOULD HAVE, SO YOU CAN ACCEPT THE CHILD YOU DO HAVE" I did accept Megan, but he was right when your child is born you have all these hopes and dreams for them, and a diagnosis like this alters those dreams, so you have to create new ones. I have to tell you I have met a lot of parents over the years who have not accepted the child they did have, holding on to old dreams, never embracing new ones. It is very sad see.

So we left the office and headed back to the car, and there in the underground parking lot it hit me so hard............. I fell to my knees and cried like a baby.....I cried, and cried. My mom embraced me with a hug, and an assurance that everything would be OK, you know the only way a mother can. And that was it we have never looked back, we have embraced every moment along away, the good ones and the bad ones. So there you have it, Megan's journey had begun, and what a beautiful journey it has been to date!

I have to sign off as I am feeling a little overwhelmed, it's been a very long time since I revisited this chapter of the story.

I will leave you with another poem

It's Spelled Wrong!
By Donna Cooper

A mistake has been made.
The word doctors and neurologists
use to diagnose our children is autism,
but it should be AWEtism.
Just think...

Awe at my daughter's progress.
Awe at each accomplishment.
Awe that we've been blessed to be
part of a miracle
Awe to see God's hand at work in my
daughters life.
Awe to meet such wonderful people.
Awe for each little step in the right
Awe for the love I never knew I had.

It's not Autism, it's AWEtism!


Anonymous Carolyn S. said...

Kelly, I have a special place in my heart for children with autism. I worked as an aide in an ASD classroom (preK) for 4 years and have so much respect for these children and their families. I learned so much from this time in my life, and I totally understand how each little step is to be celebrated. We found such joy in the little things, and sorrow, whenever someone would take a step backwards. I finally took another job helping my husband in his business because he needed me, but I still follow the paths of MY babies, and watch their progression as they grow and learn. I have subscribed to your blog (actually both of them as I am an avid stamper and scrapbooker and a SU Demonstrator) and look forward to more news on your beautiful angel.

March 25, 2007 at 10:29 AM  
Anonymous Linda McClain said...

Kelly, I have no experience with Autism except to know a co-worker and cousin who have children with autism. They are brave troopers. I know it took a lot of heart to document your story, and I just want to say how much I admire your bravery and willingness to share. Hugs to you. Linda

March 25, 2007 at 11:22 AM  
Anonymous Lori said...

Kelly, I'm Chefmama on SCS. I just saw your blog about Megan & had to read it. I can relate to so much you said! My dd is 10, also, so they were born about the same time. She has Asperger Syndrome. My other child is also ADHD in a BIG way! With OCD to boot. Picture, obsessions in a wild loud way! I loved reading this page. I didn't read the part by Erma Bombeck yet because I don't want to cry & know I will! Thank you for sharing your story!

March 30, 2007 at 6:25 PM  
Blogger Carolyn said...

You are a wonderful mother...thanks for sharing your story..it is so warm and touching and I am sure a comfort to everyone who is experiencing the same response to learning that their child has autism. I am going to sent my friend to this site...she has just received the diagnosis for her son. I am sure this will be so helpful.
I bought the Gina K stamps too!
Carolyn (SCS Cammie)

April 1, 2007 at 3:05 PM  
Blogger ~* Tracy *~ said...

I have just stumbled upon your blog while I was looking at other stamping sites. A very dear friend of mine has a little boy (now 2.5yrs old) and they have been told that he is showing signs that may mean autism or aspergers. He is such a beautiful little boy and my friend is devastated as she has always longed for a child and went through many IVF treatments to have her son. I am going to show her your blog and hope that she can gain some comfort from your beautiful story :)

January 31, 2008 at 11:52 PM  
Blogger Belas Creating Place said...

I read your blog and was so touched by the admiration and love for one little girl. She is so truly blessed. I can relate to those special feelings. I have an autistic son who is now 10. Every day is a challenge and as he enters into puberty, oh my I pray to God every day to give me strength and thank him every night for doing so.

I love the Awe-tism poem, it touched my heart. I am a teacher's aid to an autistic child in a nursery school and I am a firm believer of early intervention. I want to help other children like my son was helped.

I was fortunate enough to live in a big city when my son was little and he and I had many resources. Not just for us but for my other two children.

I now live in a smaller city and am left with the knowledge that I had from the agencies to go it alone with him. Autistic children give such joy to families and it was so nice to read your story. We are truly gifted parents.

February 5, 2008 at 10:05 AM  

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