Sunday, October 21, 2012

My Son Has Autism

The details of this post are purely therapeutic and for information sake. Please be kind with your comments and be considerate that this is possibly one of the hardest subjects I have ever written about.

My son has autism.
His name is Carter, and he is pure joy.

Many of you who socialize with us have met this sweet boy, and the enthusiasm he has for life and all of the things he has to learn from it. You may have also seen some of the things that have seemed "peculiar" to you or another child his age. We now have a term for it.


As I sat in the doctors office, bouncing a sleeping Lincoln in my arms and watching Carter putting words together with his bag of magnetic letters on the floor, I truly had that moment in movies where time slowed down to a creeping frame by frame movement, including the muffled sound and all. I could see the doctors mouth moving, my eyes darting to my sweet completely oblivious child sitting on the floor with his legs crossed, moving his letters about and spelling out his words and then reading what he had put together. I snapped out of my slow mo'd life and asked her, "Wait, you said, 'High Functioning Autism'? What does that mean?" I still don't have a good handle as to what that entails. In brief, my child is very clever. I have a million questions, and from what I understand I can spend a lifetime trying to understand everything and still not cover all the bases. Tears streaming down my face it all comes down to this: He's still Carter. He's still my blue eyed, glasses wearing, letter loving son.

That doctor visit flew by in the blink of an eye even though I'm aware I was there a full 2 hours. I remember calling Ed and for the first 2 minutes of the call the only thing he heard were sobs. I'm sure every possible hideous emergency flashed through his head. After I gained control I was able to break down the visit for him. The silence on his end was deafening. I hate phone calls for that matter. I needed to see his face and read his expression. Based on our conversation it was clear he was also confused. We suspected he was Hyperlexic (a term describing a toddler that can read and carries autistic like traits) but were not expecting this. I think its never expected for a parent to be told their child may or may not have a "normal" life, nor have the future you envisioned. To be told there is something "different" about him, in a negative way, is quite frankly life changing. What I've come to realize in this short time is this title carries only as much negativity as you allow it to carry.  Our decision to empower Carter and embrace his skills and interests will drive the type of person and in short order the type of success he can visualize. I've also learned I don't want people to be sorry and I don't want people to say they are sorry. I'm not sorry Carter is who he is. He was born this way for a reason. I have a firm belief he is meant to make a dent in this world, and I intend to be there when it happens.  I also do not want to hear, "I suspected this was the case for a while now...." These are not helpful comments to an overwhelmed parent! Slowly but surely we will wade through the incredible amount of information we have available to us and promptly put him through what therapies and schooling is necessary.

At first upon hearing this diagnosis, you can't help but feel a different scarlet letter "A" has been immediately placed upon his chest and shielding him from the world and the hurt that can there in lie is priority above all else. However as the days have passed from that doctors visit, I am able to relax and sort my feelings out. Fear continues to knock me down from time to time. I'm terrified of bullies (probably due to the fact that I grew up surrounded by so many), and what havoc they may reek on my tender son. I'm often overwhelmed at the mantle as parents we carry in this. But this challenge was given for a reason, and we are determined to see it out.

As I have researched information regarding this newfound description, I'm finding there is a whole other world about Carter I was not seeing. And quite frankly there is much of that world I will probably not be able to see for years or at least until he is able to tell me in details about it. Gosh how I long for that day. To hear my child say a sentence of english without being provoked sounds absolutely thrilling to me. There were 1000 little signs all leading to this, we just were turning a blind eye.

I will say this about the last few weeks. (And I am embarrassed to come clean regarding it. I should have always been this way. But believe it or not, its incredibly difficult to know and read what your child understands when they do not speak much.) I have found I am more patient with Carter. I recognize more easily what he does and does not understand and allow him a little bit more courtesy to try to understand. Frankly, I feel its for the better we found out now. As a wise family member pointed out, if we had found out earlier, we probably would have postponed having anymore children so I could focus all my efforts and energies on Carter. Our little family would have felt so incomplete without little Lincoln. So its true, we were ready at the time regardless of how blindsided we may feel.

The reality is this: Carter is still Carter. He's incredibly bright, has an insatiable appetite for learning and while there are a few personality traits that may be odd, I find them endearing. He's my son and I'll fight   to help preserve his happiness. Our request is this: treat him like you have always treated him. Love him for all that he is. And be open to meet him on his level. He will invite you into his world you just need to be there.


Suzzy said...

Thanks for sharing something so personal and being so honest. Carter is an amazing little boy with amazing, loving parents and family. Keep doing what your doing and being who you are. I enjoy keeping up with your family and watching your boys grow up.

Jullee said...

My nephew has high functioning autism also. At 12 years old he is so far ahead of where his parents thought he would be. He can carry on normal conversations and interact well with other kids. The secret for them was just working with him and finding what worked best for him when he was having a rough day. Often times he just needed a little time to himself to do his thing. Best wishes to you and Ed as you figure this all out.

Genesis said...

Thanks go sharing! Indon't comment much but want you to know I enjoy looking at your posts and you have a beautify family! You are a wonderful mom to your children. I think every child needs their mother and you are doing Everything in your power to help your family! Keep up the great work and know that everything your doing for your family is great! I know that it can be stressful but with the lord u will be guided good luck. Thanks for sharing too.

Zach & Lindsey Boskovich said...

This was a beautiful story of love you have for your little man! I just want to let you know that I have a nephew who is highly autistic as well. He was diagnosed when he was around one year old. He is now 10 years old. I don't fully understand what you are going through but I have seen my brother and they have so many wonderful programs and activties that they do with him that have truly helped him as he has gone to school. If you ever need advice or information about autism and programs you want to put him in I would love to help. My sister in law has research, taken classes, and etc... For how to help her autistic child and so has my mother. I can set you up with one of them if you ever want to talk about it with someone who knows what you are going through. There is absolutely nothing wrong with being autistic and I love how you put that carter is still the same beautiful, full of life, fun loving child that he is...that is 100% right! Ever child learns differently. There is no "right" way to learn and grow. We love your sweet little family. If you ever need anything let us know. I would love to help out!

Brady and Rachel said...

Sedra, Thank you for being so honest and letting us have a glimpse into your heart. You are an inspiration. Carter and Lincoln are so blessed to have you as their mother! Both your boys are so darling! I love when you post pictures of them, especially with Carter's darling glasses! What cuties!

Chelsie Jensen said...

Love you guys! He is still a sweet little spirt that was sent to your family for a reason. You are a great mama and just love him like you always have and will. Give him a extra squeeze from us

Stephanie said...

Sedra, you are awesome. You are such a good mom and I admire you. We love Carter. He is so smart, cute, and hands down the best boy we've ever had over. For a 3 year old, that's impressive. I think that says a lot about his mom. Thanks for sharing your story. I think even more highly of you for being so open. Love you.

Kristie said...

Sedra, Let me say this...
Great job Mom!
I know that you and I don't know each other well. But I happen to work with amazing and wonderful children, like Carter, as you have described here. Those of us that take the time to get to know and love these children, are blessed. It's that simple.
The reality is, the diagnosis gives you the push to help empower your child, not change who they are, not love them any differently, and definitely not to feel sorry for them. I am amazed at how open you are here, and frankly wish all parents felt this way. This shouldn't change anything in your family, other than to educate yourself on his needs. You would do the same thing if you found out your child had a broken bone or heart problem... You would educate yourself and those surrounding your family on the needs of your child...
So, let me say this again - good job mom!