Sweet friends,
I've been eager to provide an update about Jacob for quite some time, and it seems fitting to sit down and do it since April 2 is, in fact, World Autism Awareness Day. It was exactly one year ago that I published the last entry of a short-series blog that I created to detail our family's extraordinary journey with autism. The outcome of
writing the weekly updates exceeded my expectations, and
it reminded me of the incredible support we have received since our journey began. THANK YOU!
This is an excerpt from my last entry (published April 2, 2012):
"I’ve
spent the last 6 weeks of this blog describing our situation, members of our
family, our friends, and the array of emotions that we have experienced on our
journey. However, at the center of it all
is one incredible kid. Jacob is smart, sweet, gentle, funny, and an all-around
amazing little boy. He is a boy worth fighting for, a boy worth celebrating,
and a boy who deserves an infinite amount of love. He is definitely easy to
love! Jacob is not a boy defined by autism, but trapped deep inside it. We’ve utilized our energy and resources to chip
away at the autism that imprisons him, and we will continue to work hard at
making progress. We will also pray that a
cure will blow the doors right off, and for the first time, Jacob will no
longer be stifled and we will be able to embrace all aspects of our son. Until
then…we will charge on. We’ve definitely
come a long way in our journey, but it’s certainly not over. Please continue to pray for Jacob, our family,
and the researchers to pinpoint a cause and a cure for autism."
First, I'm so very grateful to each of you. Thank you for supporting Jacob, for praying for us, and for loving our little family. Your support means so much. I am proud to give you this annual update. Since April 2, 2012 until today...April 2, 2013, we've rounded the biggest corner yet and have had the pleasure of watching our son flourish in so many ways! What a year it's been.
A NEW SCHOOL: Jacob had attended a private school since the time he was Kindergarten age. The school had approximately 20 students and were taught in an intensive environment with a 3:1 (student to teacher) ratio, although many times throughout the school day it was 1:1. Dave and I felt that Jacob's success at that school had plateaued, so we began researching and interviewing new schools. After several meetings, we left disappointed and discouraged. That was until...our very own public school district continued to surface as a viable option. So, after quite a bit of research, conversations, meetings, etc. we decided to take Jacob out of the private school that he had been attending for 3 years, and enroll him in public school. It was a leap of faith that we were extremely nervous about, but we were willing to take the chance. After one year, I am blown away at the infrastructure our public school system has to offer. Jacob's IEP (Individual Education Plan) is aggressive, and is being managed by a team of miracle workers. Every month, Jacob has time with an Occupational Therapist, Speech Therapist, ABA (Applied Behavior Analysis) Therapist, time in the motor lab, time in the IPAD lab and integration with his home room 3rd grade class whenever possible. They've not only accommodated Jacob and his unique set of needs, but have established an environment for which he can thrive. The school shares, in partnership with us, the philosophy of maximizing Jacob's potential each and every day. Incredible!
A NEW DOCTOR: Since receiving Jacob's autism diagnosis in December 2007, we had seen the same pediatric psychiatrist thinking/hoping that she was the very best. But just as we re-assessed Jake's private school, we had an inkling that it was time to break ties and seek a fresh set of eyes and brain power. Our new doctor isn't a psychiatrist, but a well-respected pediatric neurologist. He worked with us to establish a plan of attack on the various issues plaguing Jacob each day. Among them were Jacob's limited diet, restrictive appetite, wild sleeping patterns, episodic outbursts, etc. The doctor helped regulate those issues which has been a great change for Jacob, and for us too!
AN IN-HOME THERAPIST: We talked for many months about securing additional ABA services for Jacob. We went back to the clinic that has helped Jacob since he was 3 years old to connect us with a compatible in-home therapist. So, right after the new year began, sweet Olivia, a grad student at UNT who is simultaneously getting her Masters in Behavior Analysis and an MBA (overachiever!), started coming to our house 3 days a week for two-hour sessions to work with Jacob. She has become a big part of our effort to defeat Jacob's autism. She has garnered Jacob's trust and respect, and does a great job of including Audrey in the programming.
OTHER NOTABLE HIGHLIGHTS:
- For the first time this winter, Jacob wore a coat, hat and gloves! He hasn't been able to tolerate a coat since he was a toddler.
- Last year, I wrote that we were still changing diapers, but no longer my friends! Jacob learned to go #2 on the potty....all...by...himself! Happy. Dance.
- Jacob's outbursts of screaming has subsided. He has mini outbursts, but he's much more calm. The doctor's recommendation to switch from Methylin to Vyvanse was a good one. Additionally, the doctor also recommended that Jacob's Intuniv tablet be administered at nighttime to help with the restless nights. This leads me to the next highlight...
- In last year's blog, I explained that every two weeks or so, Jacob would wake up in the middle of the night and stay awake. We haven't had this problem in months! Jacob has even requested that he sleep alone in his room (instead of with me).
- Although the process of eating, along with having a very limited diet, are still one of the biggest challenges, Jacob has made big improvements in this area. We've even had a few family meals together this year and have gone to a few restaurants a handful of times. Hooray!
- Jacob and Audrey began to interact! They chase each other, have learned how to share toys/electronics, and do really well together. There's just not enough time to talk about how special Audrey is, and what an incredible sister she is for Jacob.
- Jacob's also beginning to answer questions and requesting things that he wants.
- He's also telling us when he doesn't feel well, or is in pain. He'll say, "tummy hurts." This is a comforting accomplishment from a mommy's perspective!
- One of our favorite surprises was when we received Jacob's school picture. For the first time, he looked happy, excited, engaged, and alert. And....there he was. My sweet boy. Smiling for the world to see. Ahhh, what a special gift for this sometimes weary mommy warrior.
It's in that sweet smile that new hope arises and brings with it renewed energy to continue fighting. As we forge ahead through 2013, we are setting new goals and becoming emotionally ready to discuss Jacob as an adult with special needs working and living independently. There will be a time, hopefully a long long time from now, when Dave and I will not be physically capable of supporting Jacob. The assurance that he has a meaningful life is so important. With that said, a few months ago Dave and I retained a life-planning consulting firm to help us establish a support care plan. Along with a variety of programs available through the State of Texas, there are rules and laws to understand, budget planning to finalize, and tough conversations to have (e.g. where will he live? what will Audrey's role be so that her life is minimally-impacted? etc.) Obviously, this preparation is for implementation many years down the road, but time is going by so fast. This baby of mine will be 9 years old next month. I can't believe it!Although many things have changed, and accomplishments have been witnessed, some things remain the same. I continue to have a grateful heart and a peaceful soul. God's grace has awarded Jacob these victories. Prayers are answered and we smile in anticipation for what tomorrow will bring, and I look forward to it.
1 Peter 5:10 - And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
