I'm so excited I don't know where to start!! The 1st week of January we took a trip to the MIND Institute in Sacramento and the day after we arrived back home, Kolton fed himself!!! Yes you read that right!!! Kolton FED himself and is still feeding himself today!!! YAY, I am free!! Free to just put food on his high chair tray, snacks on the floor (in a bowl:), whatever, and he will eat it!!! OMG!!!
Ok, so let me back track a little so I can lead up to how Kolton FINALLY decided to give me a feeding break!! Robert, Kolton, and I were lucky enough to get a paid trip out to California to the MIND Institute. (This is like going to the White House and meeting the President for FX families). I have to admit, that our trip didn't turn out exactly how I had expected, but I did have an AMAZING time and would do it over in a heartbeat. I had expected the trip to be more about Kolton, but turns out, I was the lucky one and participated in numerous studies/research tests. I kind of enjoyed it being all about me for once!! Right now, at the MIND they have a ton of studies going on for fx carriers (I am a Carrier). My schedule included-blood work, Neurophysiological Assesment, Psychophysiological Assesment, Psychological Interview, Genetic Counseling, NTRI-TS Assesment, and a very long MRI. Pretty Fancy, Huh? Kolton participated in an eye tracking assesment and developmental assesment and also gave blood. He got off easy this time:) On Wednesday, January 6th we met with Dr.Randi Hagerman, our HIGHLITE of the WHOLE TRIP. She went over tons of info and said that Kolton is doing wonderful- we are on the right track and all his therapy/services are the right ones for him!!! She did reccommend ABA therapy for him, and we are looking into that right now. Kolton is right on track developmentally (even a little ahead in some areas), compared to other fx toddlers his age. The only kind of "bad" news we heard was Kolton has pretty severe Low Muscle Tone, which we already knew anyway. This is the reason his ankles bend over so bad, and why he is still not walking. Low muscle tone is one of the characteristics of fx, but like all of them can range in severity and Kolton falls into the severe category. So we have increased his PT therapy to 3X a month compared to 2, and plan on doing therapy riding every chance we get. Dr. Hagerman did say she thinks he should be walking in a few short months and did prescribe him Zoloft. Turns out, Zoloft is like a miracle drug for his age- it will help his MUSCLES tighten, help with speech, lessen anxiety (which he has almost zero of:) and help him not to regress (common in fx). Dr. Hagerman did also say Kolton DOES NOT fall on the Autism Spectrum, he is TOOOOOOOOOOOOOO Social and is very engaged in his surroundings!!! YAY, go Kolty!!! The zoloft will also help him stay social and hopefully keep him from the Austism diagnosis. We were very happy to hear all the great things that she had to say about Kolton, including that he was one of the cutest little fxers she has seen!! Well we all knew that already though:) During our visit, besides the not walking yet, my other main concern was Kolton not having any interest in feeding himself. If you know Kolton, you know he LOVES, LOVES, LOVES to eat, anytime, anywhere, but only if he is being fed. I wanted to know if this was a sensory/tactile defensive situation or what I could do to speed this process on- this is what Dr. Hagerman replied (in a nut shell)-
I have fed Kolton for about 2 years and now he expects it. It's not a sensory problem, it's more of a hard headed, habitual, OCD problem!! He has it in his mind that Mama feeds him and thats just how it is. She said to give him the chance to feed himself- just lay his food in front of him, let him decide what he wants to do.
So when we got home, I did just that. I out his dinner on his high chair and to everyone's amazement he picked up his fork and ate, and ate, and ate!!! Holy Moly, I am still in shock one week later!!! This little monkey could fed himself all along. OMG, all along he could do this and he was playing me for a fool!!! Shannon (his OT) and I have been working on this for a YEAR- thru beans, rice and very messy birdseed that by the way doesn't vacumm up as easy as you would think. All this sensory play, tactile defensive play- and he could do it all along. So I am thinking that Kolton probably knows way more than he lets on, and he just keeps it to himself so that we can feel like we are in charge!! Today, Kolton is also PICKING up his food with his cute little fingers and eating it. It started with cereal, and now is not limited to anything. Chicken nuggets, carrots, peas, green beans, french fries, sticky rice krispy bars, gooey jelly bars, soft muffins, you name it, he'll pick it up and eat it!!! Oh, the freedom I have found:) I can just give him a snack all day and just let him eat. I have always worried that he wasn't getting enough food, cause I was the sole feeder here and sometimes didn't have the time to sit down and feed him a snack. Heck just his 3 meals a day took about an hour each- So now I am just LOVIN all this so called free time where I can sit him in his chair and let him go to town. I actually got to enjoy my dinner the other night instead of scarfing it down super fast or eating a cold dinner because I had to worry about feeding Kolton. Yep, cold food and heartburn is a thing of the past for me:) Oh the simple things in life!!! The only way I can describe this to all you people who have not been blessed with the miracles a special child brings- it was like winning the lottery for me. Yep, it was THAT big. Nope, you may never understand it, but that's ok. I do and that's all that matters:) It is like watching the impossible, become possible. Witnessing first hand the mysterious ways the mind works. And the most rewarding of it all, not watching Kolton actually fed himself, but seeing his face light up because he is so proud of himself. Watching him pat himself on his chest like he is saying "Good Job" to himself. I LOVE it and him.
I love this kid, I love him. He is God's gift to heal me. He makes me forget about the past, and not focus on the future. I am stuck only in the moment and what today holds for us. Kolton is like that good mystery novel you can't put down cause you just want to know what comes next. And then wanting to read the sequel after you finish the book!! I can't get enough of him and each little mystery that unfolds in front of my very eyes is like a being present at a miracle.
Kolton,
Thank you for choosing me to come along with you,
as we discover all the mysteries of the Mind:)
XoXo,
Mama
