So, its been a long while since I updated, so I'll do my best. Honestly I spend a lot of time on facebook, so most people just keep up with us there.
Jake is mostly over his difficult spell and, as usual, he has jumped forward in development. The reports from school are good. He's speaking more and answering questions more appropriately. He's been a joy to be around and to take on outings. A couple of weeks ago we went to the Keel Family Function over at cherokee farms in Lafayette. The weather was gorgeous, the music was wonderful, the kids had fun, and as an added bonus, it was a lucrative venture for my business. Jake and I spent the first night together just the two of us. It was fun and we fit in with the other vendors/carnies just fine. The second night Steve and Manny joined us. The second night wasn't so great since Jake puked all over the camper in the middle of the night due to too many hotdogs and soda pops. The third night my Mom kept the boys and Steve and I got to spend a night alone during the height of the festival. We met some great people and made a lot of new friends.
This past weekend was the Boxcar Pinion Memorial Bluegrass festival. For 4 years this yearly festival has been sort of a barometer for Jake's development, and well, he's doing great. He still does many things that are inappropriate for a child his age such as diving on people and touching others. He doesn't really play with the other children and gets anxious and needs to change venues often. He lets us know what he wants though, and often he wants to "go down see the music!" That makes my heart swell with pride. The first and second night he fell asleep on a rug under my easy-up declaring that he wanted to sleep outside so he could hear the music. He's my boy alright.
The last night of Boxcar was supposed to be another Mommy and Daddy date-night, however Manny got stung by a bee (he picks them up!) and I had to go pick him up and leave Steve to hang out with our friends. We've been blessed by meeting and/or getting-to-know-better some really awesome folks, Christie, August, Gwendal, Eric, Mike, Jim and all you amazing people that we've been hanging with. We've been especially blessed by our new friends Sara, Rick and Simon. They've come out to Keel and Boxcar as well as other outings with us and just seem like nice laid back folks. Its nice to have good friends with similar interests, goals and lifestyles.
Manny.. what can I say about Manny. He's really made very little improvement lately. In fact, he's a fussy, tantrumey mess. He still, of course, has no language. Lately I am seeing a bit more of a regression and its very worrisome. When he seems to forget skills I wonder if the tumor on his brain is growing or changing, or if he goes through a spell of worsening motor skills I wonder if the one on his spine is causing issues, however my gut tells me all that I need to know. Last night was another night of no-sleep and I laid beside him in bed listening to him squeal and make strange noises, I noticed him doing something I know all too well. He was squealing while at the same time making popping-clicking noises deep inside his mouth. This is the first time that I've heard him engage in vocal-stimming to this extent, but I've heard it all before (remember the stimming video I made of Jake?). He's simply regressing further into autism and its heartbreaking. While Jake was clingy and hated to be left with family or strangers, Manny is indifferent, and will go-to and stay with pretty much anyone without a fuss. He cuddles, but isn't particular as to who it is. It tears my heart completely out of my chest when his Dad sometimes says "Do you think that he loves us?" or "Do you think he misses us when we're gone?" I just don't know.
Last week Steve's parents took it upon themselves to call Atlanta Speech and hearing school, where Steve's brother went when he was little, and was in the first graduating class there. They wanted to take Manny for an assessment. Although I knew that there were no further tests that they could do for Manny, I was completely and utterly floored by this step and this show of love and understanding from his family. I was really afraid that they, especially Pops, thought that this was something new and exciting that would "open the door" as Pops put it, to bringing Manny out of his darkness. Steve traveled with them while I worked, and on the way down Pops said "I bet they'll put tubes in his ears and then he'll hear and start to talk." I guess this is what happened with Steve's brother. All of the same hearing and speech tests were repeated that I've done so far, and the specialist asked if we were doing OT, Babies can't wait, Headstart, etc. She was able to tell Steve's dad that Manny could hear, was most likely autistic with sensory processing and motor planning issues and that there was nothing more that could be done for him than we are already doing at this point. I think it was a good trip, even if it was hard on Steve's dad to hear from a professional what we'd been trying to tell him already.
Throughout the spring I've been working on my physical and mental health, trying to get over the anger and dispair and move on towards hope and acceptance. My mind is opening and realizing that no matter what happens, it will be OK. Even if Manny (or any of us really) doesn't survive as long as we would want him to, or be as successful as we would like for him to be, that he's here for a purpose and he's already taught me a lot. I have the best possible support team of family and friends and especially my husband, who puts up with me and loves me no matter how bad the "bad days" are.
I know that I'm lucky to have what we have with our boys when I see other children with much more serious conditions. A little girl came to Boxcar with her nurse this weekend who was born with a tumor larger than her head attached to her skull. She sleeps most of the time, doesn't feed herself or have many skills at all, has seizures and is strapped to a chair or carried by others. Her full-time nurse was so sweet, and spotted my children's issues instantly and was open and nice to talk to. Things may get worse for Manny, my (cursed) gut tells me that they will, but right now we're OK.
After Christmas I entered into a serious health overhaul, worked with a personal trainer and completely changed my diet. I won't be able to do the personal trainer any more but hoop-dance has come into my life just at the right time and taught me to enjoy my body, as well as daily metitation and DAILY study of music, something I've needed for years. Both the dog grooming and sewing business is picking up, and 2 weeks ago the Chattanooga Market started. I was completely overwhelmed with the number of friends and family who came down for opening day to support this cause that I so truly believe in and am proud to be a part of. Thank you everybody!
Thats really all I can think of right now, and I hope this updates everybody who still reads. OH! I almost totally forgot, our party that started last year as Jake's birthday party, that will now be our summer fling, and will probably end up next year as a benefit for Neurofibromatosis research, is in just a few weeks. It wasn't working out with the SPB boys due to simple "not-meant-to-be-ness" but we are really pleased that we were able to get Barefoot Nellie to come play some old fashioned bluegrass tunes for us. We are so excited we can hardly stand it.
See you there :-)
P.S. my camera is broken.. so no boxcar pics yet.