"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

Monday, February 18, 2013

My Heart Hurts


My heart hurts when I see him like this.  But my heart hurts even more when he tells me to "go" when I want to hold him and try to soothe him as he falls asleep.

I haven't blogged in so long besides little statuses here & there on the facebook page because life was just going on.  There have been fabulous moments and not-so-fabulous moments over the months, but life was just moving along just fine.  We had a rhythm, conquered the holidays, school was going good minus the excessive aggression we saw for a few days, he was learning & progressing in so many areas.  But today, I felt compelled to the blog out of hurt & guilt.

Last Monday Brycen was hurting so I took him to the doctor which resulted in an ear infection as I had suspected.  He seemed to be feeling better and then he spiked a little fever yesterday and just started acting "off."  In Brycen it's hard to tell since if we ask him if he hurts, he typically will either point to a place he had an owie last or tell us "no."  We really have to read the physical signs and with him that means he stops stimming or playing with his usual toys.  

Another sign is he doesn't want me to hold him or be near him.  That might be one of the worst heartaches a mother feels.  When Aubree is hurting she wants us to hold her, rock her, lay next to her in bed.  Brycen just yells at me when I try to touch him or sit/lay next to him.  He's currently laying in our bed and has been for about an hour.  I heard him moaning and starting to cry again so I went in to lay with him and attempt to comfort him, but he told me to "go" and started screaming at me.  He didn't calm down until I left the room and closed the door.  I feel defeated.  Autism is defeating me right now.  

I feel guilty for not being able to comfort him.  I feel guilty because this sickness is following a very rare night-out that Mike & I have.  It's not that he seems to care when we leave him for a night-out, especially in the care of grandma.  And I know it's necessary for a marriage to have time away from the kids...especially necessary for my mental health since I stay home with the kids day-in and day-out and rarely spend time with other adults.  But, I still feel guilt for this.  Not only for leaving him and my duties as a mom, but now I feel guilty for even thinking this is slightly about me.  Then I feel guilty because maybe I'm not doing enough to help him conquer this part of Autism.  I dedicate a lot to him and helping him progress, but am I not dedicating enough?  How come other parents of children on the spectrum seem to get to comfort their children when they are sick without being yelled at?!  I know I know I know...every child is different.  

It's just not fair.  A mother's instinct is to comfort her child when they are ill, and it's not fair this simple action/bond has been taken away from Brycen and I.  I won't stop trying of course, but after 4 1/2 years of being rejected when he isn't feeling well, it's hard to think  it's going to change one of these days. 

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.