As the days, weeks, and months go by, it is definitely getting easier to accept what God has dealt us with Brycen. But I still have many days where I feel so much jealousy...at the store when I hear a toddler saying clear words, when friends/family comment on Facebook about their child learning their ABC's or counting, when seeing/hearing a 3 yr old is successful in potty training, when a 3 yr old is put in time-out and actually sits there, when two siblings are playing together outside or at the playground...and the list goes on. I feel jealous when I see these things, but then again I know that as parents to Brycen, we will never take a simple word he says or accomplishment he learns for granted!
I feel bad when I feel this way, but I just can't help it! I compare Brycen to other children, mostly to determine what we seriously need to work on that is typical for his age, but I also find myself once again wondering "why?" I think I will never stop wondering that...I think it is human nature to always question the things that happen to us, whether good or bad.
When I was pregnant with Aubree, Mike and I had already discussed not having any more children. Then when Brycen was initially diagnosed, we confirmed with ourselves that we didn't think it was fair to either of them if we had another child as Brycen needs so much of our attention and energy. But then I also wonder if that is fair to Aubree...she will not know what it is like to have a sibling to play with or to share secrets with and so on. When Mike and I are gone someday, it will be up to Aubree to take care of Brycen (unless of course we experience some wonderful research miracles that help him to become more independent and find successful treatments for him!). I see the joy in her little face and hear the constant giggles for those few moments each day when he pays attention to her! She doesn't usually mind when he knocks her over or purposely runs into her, because she is craving any kind of attention he will give her. Then, within seconds, I watch as she is following him around, trying to capture his attention and wanting him to play like a typical sibling would. It makes me sad that she may never have that close sibling relationship...but then again, maybe they will have a different type of close relationship where she will become more of a mother to him and will teach him things as they are growing up.
So, I guess though I may be jealous of some things...I know that there is positive that goes along with the negative. How the day starts or what happens during the day will determine whether I view the glass as half full or half empty that day...and that view can change many times throughout the day!
"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
Wednesday, November 4, 2009
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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.
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.
I always think your post are so insightful. It is true for anyone that the grass is always greener on the other side at one point or another. You definately will apperciate BOTH Brycen's and Aubree's accomplishments because you know how something so easy can become a challange and that nothing should be taken for granted. Don't worry about weather or not you should have more kids. Lots of kids grow up as only children, with 'disabled' siblings, or with more siblings then they care to have. If it's ment to happen you will know. I always wanted a big family and was heart broken when my husband up and decided 'he didn't know if we should ever have kids' about 5 months after we were married! I took it hard but after a while realized that he had some good reasons why he was uncomfortable with it. I also realized that there were a lot of other important things in my life and not having children wasn't the end of the world. I still think sometimes it would be nice to someday have kids but I know that if it doesn't happen it is okay too. We are all individuals.
ReplyDeleteThe way you guys are so dedicated to this I know you'll celebrate each and every little step along the way with Brycen. You're family people and those values will be passed on to both your kids. You never know what Brycen will be capable of when he gets older and everyone understands more about this. I think the two of them could end up being very close. And who know what the experience will be preparing Aubree for in her future!
ReplyDeleteI know exactly how you are feeling and I share in those feelings. I think our society teaches us to want the "norm" whatever that is anyway! Life is a race and a competition in everything - I think stepping outside of that race is the best thing we can do for any of our families or children...including children like Brycen and Ellie. God has given us a great challenge - for a reason...he will NEVER give us more than we can handle and he always has a handle on every situation. - Angie
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