This blog was written by a parent of a young boy that has ACC. He is non-verbal and I can already tell you through her e-mails that this boy is amazing. Sandie and I have become good friends. She's a wonderful encourager and a blessing to my life personally. So go on, read her and matthews story! Also Matthew has a success story on the ACCA website so you are welcome to look that up.
And when your done check out her very wonderful website: http://members.tripod.com/scenicbeauty/AngelsAroundTheWorld.html
Then go look at the success stories to learn a bit more about Matthew: http://sites.google.com/site/accawareness/
__________________Sandies blog entry starts here._______________________
I don’t have agenesis of the corpus callosum myself. I am the parent of a boy who is almost 15 years old in a few weeks. His name is Matthew and he loves to laugh, he has a wonderfully silly sense of humor and when he laughs he can make others in the room laugh right along with him. His happy smiley silly giggles throughout the day brighten my day and he just keeps this beautiful approach to life each and every day despite the many challenges and struggles he deals with as a result of being born with agenesis of the corpus callosum (ACC).
Matthew is globally delayed and he functions at about the two year old level when tested. But, he continues to learn and make progress all the time. In the beginning years it took him what seemed like eons to learn one thing and that skill didn’t come without therapy…LOTS of therapy…LOTS of repetition and just when I was about to, at times, give up and question if he would learn the skill…it clicked for Matthew and in the snap of fingers he learned what he had worked and worked AND WORKED on. A connection was made and he learned a new skill. All that hard work, all that therapy, all that practice, all that repetition was not wasted…not one little bit. It’s what Matthew needed and it made it all worth it. Matthew learned to crawl when he was about 2 ½ years old but in the beginning he would crawl backwards. Soon he did begin crawling forwards but it was so hard for him due to his low tone and motor planning so he would crawl slowly with his head looking down at the floor. I loved seeing him crawl but I would also cringe because if I didn’t watch him closely he could bump right into the wall or whatever was in his way since he wasn’t able to crawl AND look where he was going at the same time. Eventually he did gain strength and was able to crawl while looking. He sat up by himself when he was 11 months old but he still preferred to slouch and lean against something for support or lean against someone because it was a lot of work for him.
When Matthew entered grade school I saw a difference with the learning coming a little more quickly. It didn’t always take so much time for him to learn something new. At this time he was not walking independently but he would use a walker and needed close supervision. He struggles (even to this day) with balance issues. He has trouble with stairs, struggles with depth perception, doesn’t ride a two wheel bike but he can ride a trike and loves it! J He defied all textbook odds when I picked him up from school one day and when we got outside he let go of my hand and took his first independent steps! I was amazed at what he accomplished and couldn’t believe my eyes…my seven-year-old boy was WALKING! :)
It isn’t always easy to focus on the positive when there are sometimes so many struggles and challenges but it IS so important and very worthwhile. I encourage you to close your eyes at the end of each day and see that positive picture in your mind of something your child did, learned, accomplished and CAN do no matter how small and give thanks to God.
~Sandie *Mom to almost 15 year old Matthew with complete ACC*