"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

Thursday, August 9, 2012

The Slap of Reality

All special need's parents can relate to those moments when you feel like you are slapped in the face with reality.  They don't seem to happen as often anymore for me, but I felt it yesterday.  I was sitting in the waiting room of the therapy clinic while Brycen was in his one hour speech appointment.  Nothing specific brought it on, but I immediately thought "How did this happen?  Why did it happen to us?" 

The "why" question rarely pops up anymore because I know there is no use in trying to dissect the entire happenings of our life, my pregnancy, the first two years of Brycen's life, etc.  It's just not worth it when the present takes so much energy and emotions to deal with by itself.  Most of my "slaps" tend to be "how" now.  And it's not always negative but may be "how can I make this easier for him?" and just how to handle the day-to-day stressors for both him, us, and his sister. 

So, here I was sitting in the empty waiting room and these two questions go through my head.  I'm not quite sure why it happened then because he's been making slow but fabulous progress in so many areas and I am so proud of him.  Of course my eyes fill with tears and I just hope that the receptionist doesn't notice or that none of the other therapists walk through the room until the tears dry up.  Because I hate when someone outside of my immediate family sees my vulnerability about this.  I don't want people to think of me as anything but strong for him.  I WANT to be strong for him...but sometimes reality just slaps me in the face and it gets the best of me. 

We have no clue what the future holds.  No doctor or therapist can tell us what the next year, 5 years, or 20 years will look like for him.  So, I just cling to the present.  Try not to dwell on the past and the "why" and "how", and though the future will haunt me frequently, I also try not to dwell on that.  The present is already taking over so much of our life that I just don't know what more I can fit in right now. 

Wednesday, August 1, 2012

Summer is winding down...

It's hard to believe that Brycen will be back in school two weeks from tomorrow...1ST GRADE!!  I'm excited to see where this year will take him with some increased independence built into his IEP, a new teacher, and some new classmates.  He made tremendous progress in kindergarten that our hope is the progress will just keep snowballing with every additional year.

Brycen just finished his Extended School Year (ESY) hours where he was mainly working on socialization and routine, while continuing to work on communication with others using his device.  He met with a school associate a few times a week for most of the summer and they spent time with the summer YMCA group.  We are AMAZED at the progress Brycen made with this addition to his services!  He looked forward to going and was always surrounded by his peers.  The kids who ranged from his age to a few years older seemed to really accept him and embrace his extra needs.  It challenged him to be accepting of his peers around him, to share and take turns, as well as to learn how to communicate effectively with him.  He really thrived in this environment and I hope it's something we can continue with next summer!  Not only did his summer associate work on all of this with him, but he also overcame a lot of his fear around swimming when the kids would have free time in the pool in the afternoons.  He became more independent in his swimming and with the help of a swimvest that a friend so graciously is allowing him to borrow, he will actually jump into the deep end himself and swim around!  Next up...swimming lessons this year so we can build his confidence and our trust with him around water.

Brycen continues to attend speech therapy at our local clinic 3 times per week and will continue to do so once school starts.  The best part about this is we were able to push his therapy times back to 3:30 which means he won't miss any school this year!  How is that for having the best of both worlds?!  Depending on his fine motor and other skills, we may look into adding Occupational Therapy back on after school starts.  As of now, he seems to be keeping up with the Physical Therapy parts so we are not looking into that in the near future. 

With school starting soon, we will begin a new routine with both kids.  They are going to be riding the bus every day to and from school (or to therapy on those days for Brycen)...which I guess means a new routine for myself as well and more independence for all of us!  My babies are growing up and getting to be so big!

Finally, I wanted to share what my personal goals for Brycen are this year.  I would like to see his communication skills continue to improve whether it is through verbal, gestures, using his communication device, or sign language.  I also would like to see his aggression decrease at both home and in the school environment when he is frustrated.  I want him to understand he will have to do "work" at school and if he chooses not to, he will lose privileges such as recess or computer/iPad time.  I want to see his comprehension of reading and math continue to progress.  I want him to enjoy going to school and building relationships with his peers and teachers. I want those who work with him to enjoy it and to learn something from him.  Most of all, I just want to see him happy and thriving like he did this last year. 

Thank you for being a part of Brycen's journey!  He is very very VERY lucky to have so many supportive and encouraging people around him as he shows the world what he is made of!

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.