"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Tuesday, August 31, 2010

What was it like before?

Mike and I started dating almost 9 years ago and have been married for over 5. I honestly cannot remember what life was like before him. Of course I remember the friends I hung out with, the jobs I had, but overall, I can't remember what day to day life was not seeing him and talking to him each day.

Only a few short months after Brycen was born, I remember thinking that I could not remember (nor did I want to) what life was like before him. What did I do with all my free time and where did all of my money go?

I also remember thinking this only months after Aubree was born. What was life like with just Brycen? It's amazing how you feel like you have it all, and then when you have another baby, your heart just grows with that baby.

Now, almost two years after Brycen began regressing, I find myself thinking back and trying to remember what life was like when he made eye contact...when you could understand the words he had...when he wasn't aggressive or flapping.

The one thing I can remember is sitting at the doctor's office for Aubree's 3 month check up on October 28, 2008. Brycen was sitting on the floor playing with colors, and after the doctor finished examining Aubree, the doctor asked if Brycen talked. "Of course he does" I remember saying and then listed a bunch of words that he could say. Then I realized I hadn't heard most of those words for awhile...maybe even weeks. I remember the doctor bringing out a chart and asking me a variety of questions and showing me where the typical 26 month old falls. It was then that I realized there was something deeper in Brycen. I can't remember leaving that appointment, I can't even remember if I called Mike at work to talk to him about it. I do remember calling AEA almost immediately after returning home per the doctor's suggestion and them saying that someone would call me back to get his information and set up an in home assessment. Then the memories end. I think I have chosen to block out this time of my life and have repressed these memories because it all seemed to happen so fast and was so scary. We didn't even talk to many people about it. I didn't share with most of my friends and a lot of family about the in home therapy that was starting...I actually didn't even tell them about all of it until Brycen received his first tentative diagnosis of Autism in June 2009. It just didn't seem to be any of their business and at the time, we really didn't think people would understand.

It's crazy how our mind works and we start to "forget" how life was before these things. If I really wanted to, I could play back many of the home videos we have of Brycen for the first two years of his life...but I just can't do it. I have not been able to watch any of those since he began regressing. It just hurts to think about what was there and what was "lost" for some reason that we may never know. I think I'd rather just live in today's world and know that we are doing everything in our power to help him bring those things back.

The number one thing we have learned when going through the past two years is that we will never, ever take one thing for granted in Brycen's (and Aubree's) development. The littlest things cause for celebration because they slowly add to those big things that most parents just take for granted in their typical children. Brycen's a fighter and he brings a special joy to all of those around him that let him into their life!

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Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.