It’s hard to believe that it has been since October since I have really given an update on Caleb. Now writing after these many weeks I feel as though I have missed speaking to a member of my family, as that has what the entire 9,000 or so members of Caleb’s Facebook pages have become for us.
For this update, let me first give some news about our family in general. Since completing the book some months ago I immediately shifted gears and began working as much and as hard as I could, doing a number of odd jobs, building websites, and building a business—one that I had started before Caleb’s accident. I just recently finished the groundwork for the business—a mobile marketing company. In case anyone is interested in checking out the business you can learn more about it at www.celligy.com
I have also been speaking pretty frequently, at various churches, mainly about Caleb and our experience and the things that God has taught us over the last year. I continue to serve God where I can and with whom he allows me to cross paths with. There are two beautiful souls that he is allowing me to mentor and minister to now. As far as ministry full time in a congregation that is not something that has presented itself as of yet, but I remain open to whatever God would have me do.
Right now I am doing a 3 part series for the Smith Springs Church of Christ. The topic is on God’s forgiveness, and the lessons have to do with looking at various aspects of forgiveness from the Book of Matthew. In them I share the texts that I struggled with to come to a place of forgiveness in my heart toward the teens that pushed the rock that day at Fall Creek Falls. On the 11th, I spoke about our forgiving each other and how it is we can find it to forgive those who have harmed us. Next Sunday (the 11th) I will talk about God’s forgiving us, and how much we have been forgiven. Then on the 18th I will share some personal things from my writings and how God resolved feelings for me personally through the texts that we’ve talked about. If you would like to hear the first sermon from this last Sunday you may hear it here:
Tiffany is hard at work as a stay-at-home mom. The first few weeks have been rough as we are still in that sleepless night phase, Tiffany more so than me. I have to say I think my wife has now achieved superwoman status as I have no idea how someone can function on 2 hours of sleep at night, get up and get everything read the next morning, and then Colby and Caleb ready for school. Incredible! She takes care of and teaches Connor, our youngest son, throughout the day, as well as take care of our new infant daughter Chloe, whom I must say is an absolute delight to have with us. All the pink that I am starting to see around the house has certainly given the Brown home a new and happy flavor. She is certainly a princess.
Colby is doing well with school, and seems to be growing faster and faster each day. Gone are the days of Thomas the Train and Cars (those are Caleb’s favorite things now), and now we are in the superheroes, and play swords, and swashbuckling adventures on the living room sofa. It is interesting though because our night time reading with the boys have become quite an adventure itself. We still read books with Colby, but not when I do his nightly bed time Bible story, instead of just reading it, we act it out. Colby told me one evening as I was about to read him a story from one of his little Bible Story book, “No daddy I don’t want that book.” I was a little scared of his reaction thinking, “Oh no here we go…he likes superheroes more than he like Bible stories.” He then said, “I want you to tell me your stories.” In other words, Colby likes it better when I tell him Bible stories, much the same way I preach, standing up, walking around, and very animated. So we put the Bible story book on the shelf and now each night we take on a character, Caleb and Joshua secretly going into the land to spy out the land of Canaan, Jesus healing the little girl, David fighting Goliath, etc. Colby really gets into the stories and loves them. I am glad that he wants to participate!
And then finally as for Caleb, wow have we come a long way. The main thing of course was him starting school this last year. We went through a lengthy process of getting him his IEP’s (goals and objectives for the next year) and after a period of getting him acclimated to leaving our home every day and getting him into a classroom setting, we started seeing the results instantly. You may remember some time back, us talk about how Caleb had slowed in his ability to handle multiple therapy tasks and that his recovery was becoming more gradual. It seems however that right before he started school, it sped back up again. Caleb is once again learning at a more rapid pace, and is able to handle more activities at night, even coming to us now and asking us if we will “play beanbags,” “do matching,” or “color.” We believe that him being at school is making a difference socially as Caleb is acting more his age and seems to be more mature. He is also modeling behavior similar to his peers, so again I think the social aspect of him being at school has helped.
Academically, we are seeing the same kind of thing with his objectives at school that we have always seen at therapy. He learns new concepts at school, but he “gets them,” from all the hard work we as parents put into it here at home at night. One of his IEP goals was matching—learning how to match object to object, then object to picture, and then finally picture to picture. He didn’t get it at first, but after working with him nightly on it for 2 weeks, he immediately was able to take one of Colby’s matching picture games and match them with relative ease. This is a huge success for Caleb because it is showing not only the ability to match, but also a cognitive ability to reason—something that Caleb was graded quite low on when we did his IEP’s.
As far as his therapy at Vanderbilt Caleb is excelling in incredible ways. He just recently passed 5 out of 8 goals and has accomplished most of his OT goals. He was just evaluated at Vanderbilt and we hope to hear the results Thursday. In fact he is doing so much better that they have decreased the number of times he is going now, from the 2 times we were going per week, to now just once per week for PT and OT, and once every 2 months for vision. As for his vision, Caleb no longer has tunnel vision, but has 20/20 in his right eye, and 20/40 in his left (with a 30% left field blurriness). Again this is something that they believe that with continued work will get better.
As for his IEP’s I did want to mention that when he was evaluated, the way they grade students is from 0-130, with 70 being baseline average, and anything below 70 being considered “significantly delayed,” or what was once called “mental retardation.” Caleb consistently placed in the low 50’s range—a result that was hard to hear as parents. However in the words of the board of education, “This is where he is right now. We roughly have 3 years to get these scores us as high as possible. He needs serious intervention right now. Let’s hurry up and get him in school.” The 3 years she was referring to is the time when the schools re-evaluate Caleb and how he will then be classified for further education in school. The greatest barrier that they see for Caleb right now is not that he can do stuff, but that he can understand the things that he is doing, i.e. cognitive ability, problem solving, reasoning, etc. Those are the main things we are working on and those are the main things that we are praying about.
Taking a step back from all this, and looking at the big picture, even though the things that the board told us are scary, we believe that Caleb is continuing to learn and now that he is in school he is starting to show signs of growth in those critical areas: cognitive ability, problem solving, reasoning, etc. His learning how to match is a case in point.
Currently we are having an issue with the workload of the teacher at Caleb’s school. They have added so many kids to her class that Caleb has been lost in the shuffle so to speak. We don’t blame the teacher for this as she has been in communication with us about this every step of the way, and it has to do with her requests to have an assistant added go to deaf ears. We are currently communicating with the school, ARC, and the IEP board to make something happen. As parents of a special needs kid, we’ve learned to be a little more assertive than we’re used to being. But the fact is, if he is going to be in school, he is going to have to be able to learn, bottom line. Please pray along these lines. Thank you.
So now life, for us, is much the same. The boys come home from school and now instead of “therapy” which has historically tended to divide us as a family at night (Tiffany with some of the kids, while I am with the others—one doing things while the other does therapy), now we say that Colby and Caleb both have homework, and we try to do it together as much as possible in a family atmosphere. This has made for a much smoother and happier home! After PT, OT, ST, VT, and schoolwork, and after tooth brushings, jammies, books and night night, Tiffany and I collapse on the couch for a few minutes to chat before bed.
To say its nuts right now is an understatement, but I have never been more thankful. God has been exceptionally good to us and though each day presents new challenges, we still have our entire family together and that has meant so much to us this last year since we have been home. Nothing is the same as it used to be, and that is a good thing. Walking with God now every day is an adventure and more real than we have ever experienced in our lives.
As for the book, my poor editor has gone through about half of the book now. I say poor, because when I submitted the manuscript it was over 450,000 words! It is now nearly half that and she is still going through it. She is about midway right as we are in the middle of therapy at Scottish Rite. The bigger hang up with the book right now is money. We simply don’t have the funds to turn her lose and let her go at it hard and heavy and full time to “make it happen.” Caleb’s bills still continue to grow, and though I am working as hard as I can, I am still not bringing in enough for those “extra” things like that. But I believe that it will be done and ready right when God wants it to be done and ready. That’s one thing we have learned about God. His timing is always right.
Finally, I just got a call from Scott Arnold, news reporter from WTVF Channel 5, asking me if they could do a long segment for an update on Caleb. We agreed and will soon be taping that segment. I will let you all know as soon as it taped.
Please continue to remember Caleb in your prayers. Please pray for his cognitive abilities and for him to learn the things he needs to know. Also please pray that my “tent making” will grow so I can fully support my family, or that God opens up a yet to be seen door. Please pray for our editor to ensure that the book is being edited the way God would want. And thank you for all your prayers for our family.
God bless and talk to you al again soon.
P.S. I would love the opportunity to come and visit your congregation and share with you what God has been doing in ours and Caleb’s life. I wrote a short blog post not long ago about some of the topics I have been speaking on. Let me know if you need any guest speakers for your congregation. Thanks!