Friday, May 2, 2008

Life with a Special Needs Child

My sister sent along an update and a speech she gave at her daughter's rehab center. It was too good not to share:

Greetings, my name is Tania ***** and this is my husband Aaron. Aaron and I would first like to congratulate the Rehab Center on their 36th Anniversary and all the work that it took to reach this milestone. The Rehab Center asked us to give a little story on our experiences with the center.
So how did we get here? Aaron and I are the parents of 4 children, Taylor, Tristyn, Ashlyn and Alex. Tristyn our daughter is the second of four children with only 15 months separating her and our oldest daughter Taylor. At around four months of age we started to notice that Tristyn did not seem to be meeting her milestones. After many months of trying to persuade the doctor’s on a “mother’s instinct” that something just was not right we finally had an MRI at 10months of age. The MRI showed that Tristyn has Agenesis of the Corpus Callosum, ACC for short. ACC is a rare birth defect in which the structure/nerves that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent. What does this mean you wonder? I am sure most are aware that the right side of your brain controls the left side of your body and the left side of the brain controls the right side. For Tristyn, her brain itself is fine but she does not have the nerves that allow the right and left brain to seamlessly communicate with each other. Hence leaving her with the struggle of getting information back and forth. Imagine taking all the traffic from a 16 lane superhighway and trying to route it down a single dirt lane road. ACC can occur as an isolated condition or in combination with other cerebral abnormalities. In our case we were fortunate that Tristyn’s condition is isolated with no other anomalies, genetic conditions, etc. She did have eye surgery at one year of age and has also dealt with extremely low muscle tone which has been the biggest cause of motor delays in fine motor and gross motor skills. The neurologist painted 2 pictures of a life with ACC, the first is one without struggles as many people are walking this world without their corpus callosums and are even unaware that they are missing this important structure of their brain the second is one that is severely impacted. Unfortunately our situation is closer to the second and as a result of Tristyn’s struggles we sought out services at the Rehab Center nearly three years ago. Tristyn presents very similar to that of an autistic child – self-stimming behaviors, non-verbal, isolated in her own environment, etc. So needless to say our struggles were numerous prior to starting here. We could not run the sweeper or garbage disposal without Tristyn screaming. She hated bathtime which ultimately led Aaron and I to playing paper, rock scissors on who had bath duty and it was the fastest bath that either of us could give. We were also very limited on public places we could go due to being unsure how Tristyn would handle the people, the noises, etc. As a result we would do things with family as they tolerated what we were going through and understood the behaviors she would have. Relationships with others seemed to be limited due to it being easier to avoid the situation than have to explain everything with Tristyn. There were even a couple of family weddings in which we were forced to leave prior to supper due to Tristyn being unable to handle the situation and the sensory overload. These times were very difficult for our family and resulted in many tears, many struggles, and an older sister that was wondering why we were always the first to leave places.
We started Tristyn at the Rehab Center the summer she would be turning three. She came four days per week the first summer with myself, a high school babysitter and a future sister-in-law covering the times she came. Honestly, in the beginning I thought we made the biggest mistake ever by enrolling her for services. Tristyn would scream through the entire session and I could not believe that it took five adults to manipulate a three year old with severly weak muscles – guess she was stronger than what she led on!!! I would cry every Friday on my way home with her questioning myself on what we were doing. Looking back now I can not imagine what life would be like if we had listened to my gut and pulled Tristyn from the program. Tristyn has made some wonderful gains during her time at the Center. We no longer have the serious aversion to noises making it much easier to do your day to day activities around the house. She has even taking a liking to dancing to Hannah Montana with her two sisters! She also loves the water, sometimes swimming in the bathtub for an hour, she frequently giggles during her sessions in the pool with Jason, and she really thinks she is special when her dad takes her in the hot tub at home. She has gone from a child that could not walk on her own when she started to walking independently, going up and down the steps independently and doing her best run to the school bus in the mornings. We no longer deal with the aversion to touch and has learned to give some of the best unconditional hugs ever! We have also seen a dramatic increase in her eye contact and attention to things going on around her. She also knows the way to my heart as she is quickly becoming a great shopper loving to walk and ride in her stroller through the stores and malls – what mom does not relish in spending the day shopping with their daughter! As you can imagine we have seen more improvement than we can summarize into words; however we still have a long way to go in some areas. We are hopeful as Tristyn continues to improve and as new activities and exercises are tried that we find that key to continuing to unlock the hidden treasures within. We will not give up on our daughter and we hope to see as much progress in the next three years as we have seen the first three.
When preparing this speech I looked back over the reports and evaluations from Mr. Burns, Beverly and Christine and this also made me realize the progress Tristyn has made over the years. She has gone from uncooperating with all activities and exercises to actually maybe even enjoying her time at the center – especially with her buddy Christine! It is rewarding to see things she does do summarized in the reports when most reports discuss the shortcomings.
We are forever thankful for the dedication of the staff and their willingness to continue to push Tristyn to reach her greatest potential. It is rewarding for us to see how much the staff cares for Tristyn and all the clients that come to the center – although they can be unforgiving when you make a mistake such as sending your child dressed as if she were a member of the red hat society!!! Guess I will have make sure not to make that mistake again!!! We also would not be where we are today without the help, love and nurturance of Tristyn’s great aunt Lois. Lois could not be here tonight due to a previous commitment but she truly has been a huge key in making this all work for Tristyn. She has the most unconditional love for Tristyn and strives on the amount that Tristyn has taught her about life and how much many of us take for granted on a day to day basis. I think many of our family members and those around us have realized how precious life is and how your outlook on life can change by watching someone like Tristyn develop and learn new things. Life with Tristyn has been a struggle but it has also been a blessing and an eye opening experience. We will continue to endure the daily, weekly and monthly struggles along with the celebrations of each new task Tristyn learns to do independently and hopefully with the help of the activities and staff at the Rehab Center the struggles Tristyn faces decreases and the triumphs increase!

2 comments:

adoro said...

I'm so glad you posted this...definitely a message the world needs to read about.

Several years ago I worked with the developmentally disabled and TBI in various capacities, and I can honestly say I've never been the same. Wheras I wasn't in any place long enough to see any real results, I was there at times when certain people made great strides, and it was such a cause for joy!

You must be so proud of your niece, and your sister! :-)

a thorn in the pew said...

I sit here with tears streaming down my face. I have been in her position and when anyone gives us help or comfort, it means so very much as a family. Life with a child on the spectrum is hard and trying but it is the glimpses of hope that allow me to see God's grace(and give me hope). Thank you for sharing this(we had a hard day here). I will keep your sister's family in my prayers.