Pumpkin Carving at the Harris House

Back to school... take two!

Every moment of this week has been awesome since Monday morning. Hours after my last post Manny was offered a place at two different private preschools, as well as a part-time place over at a new program. Between the two we managed to get him back into a 5 day schedule within a couple of days. One of his former teachers (not his teacher this year) came over to me and did a little dance and sang "We got Manny! We got Manny!" I smiled all the way home. They sent a note that said "He had SUCH a great day today! Ms. P and I couldn't get over how much his gross motor skills are improving! He climbed all over the playground equipment :-) And he even spoke a few words to us!" He's a PERSON to them. Sometimes it takes a bad experience to make you appreciate the amazing people in your life.

I don't think I've stopped smiling since Wednesday. I've gone back to the gym, I've been dancing again, bags have been sewn, reservations for the Market this Sunday have been made. Karen has been in the sewing room helping me and becoming part of the Bratsacks team. Life is somehow even better than before.

Jake came home today with his report card from Kindergarten. He's "in progress" on everything. That's OK. Something tells me that both of my kids will be a "work in progress" their entire lives. Heck, I am a work-in-progress myself. In Jake's backpack were the most wonderful pictures I've ever seen. I opened the envelope in front of my mom and husband and my mouth fell open. "What kind of miracles are they working up there at that school?" I whispered. I can't wait for the order to go through, I MUST show off the proof. MY baby, smiling at the camera WITHOUT HIS HAT! This is his first professional portrait:



On Comments:

I've never had much respect for the Anonymous Comment and I don't think I've ever left one. I've published a few that showed up here, most I've deleted. In my opinion they mean: I'm ashamed of what I'm about to say, or I'm ashamed of who I am, or both. I can deal with the comments that have said "You are in denial," "You are insane," "You need to get off the drugs." I was shocked at at the comment saying that Manny shouldn't be in a class with normal children, and the comment that told us to "be careful, bad things happen...". I didn't know that sort of intolerance still existed. Fortunately my life has been an open book for so long that I have grown a pretty thick skin, and I think that confuses people with something to hide. I would have continued to endure such "anonymous" comments except that some of them have contained Manny's full "real" name, which I never use online, or in real life for that matter. After a quick poll of my friends it became apparent that even those close to us are unaware of how to spell his full name. Only teachers and doctors call my children by their "real" names.

***This indicates that at least some of these comments could have been sent from people who have access to Manny's former classroom. As disheartening and downright frightening as that is, it only solidifies our confidence in our decision to remove him immediately, once the first few nasty comments came in. ***

I have disabled comments on my blog, because it has become a vehicle of harassment, and that is just silly. I enjoy the input, advice and support that I received in my comment-box until Friday, so if you are a regular poster and interested in commenting, please send me a message and I'll add you as a member. You can also send any negative commentary to the same address provided by this blog.

River Trip!

On Saturday morning, Steve and Manny had plans: Steve was going to watch football, and Manny was going to Granny's house. Steve, in an effort to have a boy's night, said I was welcome to go out. I called my friend Tim, who was camping at the outfitters, and told him that I might come up and camp with him and his friends. He INSISTED that I bring Jake. Now thats a true friend, camping at the river with his pretty lady friend and he wants to hang out with a 5 year old? He loves our kid, and has been dying to take him in the drift boat on a river trip.




We floated the river from 4 PM until about 7 PM. I was apprehensive to take Jake on a trip that long with very little option for "escape." We packed snacks, drinks, and I had my own iphone and Jake's itouch in case Jake needed to remove himself from the situation at any time. None of us brought a camera except for the iphone, which ran out of batteries.

What an absolutely AMAZING trip! Jake did wonderfully, and Tim and Nancy were so sweet and accomodating. He can be a handful, but he knows when people love him, and he and Tim bonded in a way that only two pirates can *wink.*





Jake only got apprehensive the last 30 minutes of the "three hour tour" when it began to rain. The rain went away and we were blessed with one of the brightest, most defined double rainbows any of us have ever seen.

We ate a very late dinner and Jake climbed into the tent and played itouch to excape the pouring rain. What a great Mom and Son adventure. THANK YOU TIM!!! I mean it, you gave us a wonderful gift.

I am sitting here completely free of the Elephant that sits on my chest. I'll post why tomorrow, but this is most free I've felt in ages.

Blog Posts Removed

This probably isn't going to be the most popular decision amongst my readers, but I'm not really interested in being popular.... obviously.

At the request of [the school], I have deactivated the blog posts about the I.E.P meeting, and my school observations. The last post you will see that is specifically about school is this one {also removed]where I talk about how wonderful school is going, and about how the stress in my life has suddenly been lifted. I have not removed the post about Manny's M.R.I and Scottish Rite because I get to describe a miracle in that one.

I am not concerned with being right or "winning." I've often said "I would rather be happy than right." I just want what my son and family needs. I am extending an olive branch to [the school] and removing the posts. I have given up my job, I have given up my time, and now I'm giving up my freedom of speech. I'm not sure what else I can give up to show them that my child is the most important person in this entire insane mess. Today Manny's teacher told me that she is willing to say in a meeting that Manny's disciplinary issues are resolved, he is no longer hitting or pinching. She also said that she doesn't feel like they can't "handle" Manny for a full day, just that he needs more than they can give him, and I assured her that he will be getting that through his therapies, and simply from being around other children.

I hope everyone has a wonderful weekend.

Rock City

What to do on a Saturday

Photo album of the day can be found here:
http://www.flickr.com/photos/56083521@N00/sets/72157624341283343/

The end of Aquarium Camp

**After reading, please read the letter from the Director of Education at the Aquarium in the comments section**

Well, here's the post I said I wouldn't be making in a while. Its kind of a hard one for me, because I'm going to post an honest review of what happened at the Tennessee Aquarium Camp 2010 with Jake enrolled in the Aquatots program. The Aquarium is a very very important place to us, and we have been members since I was pregnant with Jake, our first membership being bought so that we could preview the Ocean Journey. We get the Family + guest membership which is $155 per year and I don't think we've let it lapse much at all in those 5 years. Jake absolutely ADORES the aquarium and we go there maybe once per month or more, often with more guests than our membership allows. The aquarium has been integral in our homemade therapy sessions to teach Jake appropriate behavior in public. Its the "go-to" place to burn off energy, educate and relax. It will be the same kind of place for Manny as well, and its a safe place for me too.

When filling out the application for the camp, I was pleased to see a section for listing any special needs that the child may have. I assumed that either they were accustomed to having special needs children in camp, or that someone would contact me if they had any questions. No one contacted me, in fact I either didn't receive the packet in the mail with the information or it got misplaced here. I called on Friday morning (yes, I should have called sooner) to try to get some information (like where to drop Jake off) and to speak to the education coordinator about his special needs, but my call wasn't returned until Monday when I'd already dropped him off.

The Aquatots program is for ages 4 to 5 years (must be potty trained). For some kids this camp may be the first time they've ever been away from their parents, and I witnessed a meltdown by a little girl who didn't want to stay. Her mom said it was her first time, and she was fine later. I had butterflies with razor blade wings in my stomach. I attempted to explain to the counselor that Jake was autistic, and really didn't get much said, it was a flurry of activity and there were kids and parents everywhere. I left and barely had the ability to save my tears for the car. I just hoped he made it through the day... I'd just dropped my little boy off at CAMP. A year ago I would have said "No way, there's no way Jake could make it through even a moment of camp."

The first day of pickup (I still wasn't sure of the drop-off pick-up protocol because I didn't have a packet or parking pass) I walked up and was told "Ehh.. *shrug* he did pretty good. He won't sit for crafts."

Tuesday pick-up I was told "Wellll.... I guess he did better than yesterday. I just have to stay with him all of the time. He really doesn't like crafts."

Wednesday pickup went better, one of the counselors smiled and put Jake into his seat while the other gave me the sign-out paper. I asked how he did and got another "Oh, he did pretty well, I guess." I said "You know, he really wanted to do this, and he tries hard." This was met with absolutely no response at all or a small grunt, I'm not sure. I was sad. Was he having fun at all? Did he smile or laugh or like anything? Did they just hate me for bringing him? That uneasy feeling wouldn't go away. Ugh, I never know if I'm doing the right thing! Meanwhile Jake still said he wanted to go to Aquarium "school" and only got a tiny bit apprehensive when he was dropped off (for Jake anyway).

Today Granny took Jake to school and Steve got a call around 10something from one of the counselors. She said that Jake needed to be picked up, that he had yanked a little girl's hair and "besides, we're about to do crafts and we're using dirt, and I'm afraid that he might eat dirt and get sick or something."

As far as I know Jake doesn't generally eat dirt (Manny does). Steve said that he completely shut down after that comment and just wanted off of the phone. Why is that statement offensive to the parent of a child with special needs (who, as far as we know, doesn't have dirt-eating tendencies)? It kind of comes across as "Well, he might eat dirt.. cause well, I've heard that some retards eat dirt." Maybe that's a little oversensitive, but oh well, its been an emotional week. The comment was repeated to Steve's dad.

Granny and Pops and Zachary were actually still AT the aquarium, so they were able to join up with Jake instantly. For all of those who have asked (thank you for loving my kid), Jake isn't really aware of what was going on, and is not upset at all by the outcome. He was probably just glad he didn't have to do crafts.

I called the education coordinator and we had a long talk. She was wonderfully courteous to me and spent a long time on the phone with me. I gave her all of my constructive criticism, saying that it was misleading to have a section in the application asking about special needs if nobody read that section or attempted to address any concerns. I thought it might be appropriate (assuming your program accepts special needs kids) to contact parents who wrote in the application that the child had special needs and find out what was going on. I would have been happy to send Jake for only half of the time of camp, maybe pick him up before crafts, if that was what needed to happen for him to be able to have a positive experience, HAD I GOTTEN ANY COMMUNICATION AT ALL. She said that they had had a discussion about Jake the day before. Really? Because... I'm his mama, I'm always having discussions/IEP meetings and the like so that I can work with his educators to make sure that everybody gets what they need out of a particular situation. I can give you ALL sorts of wonderful ideas about how to make this better for everyone, even if that means picking Jake up every day after only an hour of camp. I told her that I had basically been making big shark-like circles around the aquarium for 3 and a half hours anticipating the call EVERY morning, and wouldn't have been the least bit surprised or upset should I have had to pick him up early. I would have ADORED to have been a part of ANY discussion that they had about my son.

I also talked to her a bit about the counselors attitudes. This prompted a call from one of the counselors. These gals are teenagers/college students, and this particular counselor said that she is going into education with a focus on special needs kids. I told her pretty much everything that I had told the education coordinator. I explained what a big deal that this was for everybody concerned, and that a mama like me could use some positive reassurance just every once in a while. She seemed to also be frustrated that there was no communication whatsoever and if she she had been more prepared, she felt she could have done her job more effectively. She said that she only gets the papers with the information on each child every Thursday and camp is still going on. Maybe someone positioned above the counselors should read those papers BEFORE the young ladies taking care of the children? I commended her for doing an awesome job spending her entire summer with classes of 18 crazy 4 and 5 year olds. I wanted her to know that I didn't blame the counselors, I just want someone to talk to me about apparent problems before it ends with it becoming a disciplinary issue. If he's too much trouble for you to handle, just tell me, we can work it out. Maybe some changes need to be made should the aquarium continue to include special needs children in their summer camps.

I broke down in tears with both ladies, I don't think I've ever cried so much in front of strangers as I do now. I'm really sick of that, BTW. I gave them the example of Toy Story 3: Jake has been DYING to see this movie, we've watched previews, he's been drawing the logo, and the other day I took him to a matinee, his first movie theater experience. I had two choices: 1) I could say "I paid $20 for this, and we're gonna watch the whole thing." or 2) "We're gonna see as much of this movie as we can, its Jake's treat, Jake can decide." After the previews Jake asked to go home. He accepted a potty break as an alternative and I left his backpack inside the theater because I knew he'd be too OCD to leave it behind. That got him back into the theater just in time to see Buzz and Woody on the screen. My baby sat for an entire 45 minutes of the movie. I pushed him to the brink, bribing him and asking him to sit back down, to sit in my lap until he had had enough and was on the verge of a meltdown. I went home satisfied that we got through exactly 1 hour more than I had expected (he could have bolted at the door the second he saw the screen). I opted to take what we could get, and so I was really happy with the result. I would do the same thing for Aquarium Camp.

Jake has been invited back to camp tomorrow, maybe to be picked up before crafts. I told the counselor that honestly I didn't think I was emotionally prepared for that. If something else happened I'd probably fall out.

Hopefully everything will go smoother if Jake decides he wants to do "Aquarium school" next year. Everyone was extremely cooperative and nice to me today. I just don't think they were prepared. Another mom said that its possible that few parents with kids like Jake have the balls to enroll them in such an ambitious activity. I still don't really know if he enjoyed it or not except that he actually WENT with the counselors the second third and fourth day.. which is a gigantic step for him.

Jake has a little plastic frog that he got from camp the first day, I think. Today he told his dad a whole list of things about his frog, like what it eats and where it lives. He talks about "Meggy" the counselor a little bit. It may not always seem like anything is getting through, and teaching him is far from instant gratification, but its worth it, I promise.

Summer extravaganza.

For those who are asking for updates and wondering if I've "quit my blog"... please understand that its summer. I had NO idea how challenging that this time of the year was going to be. Its a frenzy of not-being-able-to-work, less-not-more childcare and fun-stuff-to-do. I can't keep up at all. Manny has hit the "almost 3year old" stage that seems to be one of the most difficult times for children with autism. He is trapped inside of himself.. and is showing his frustration constantly, and can barely be taken in public for any period of time. He is on a sleep schedule of approx 10-11 PM until 4 or 6 AM.. which is a HUGE improvement. I can't even begin to describe. I feel pity, love and repulsion.. the thoughts that go through my head plague me. My greatest fear is the future. MY GREATEST FEAR IS THE FUTURE.

Jake is going to Aquarium Camp every morning this week, so my normal schedule is turned upside down, even with the (Omg.. are you an angel from heaven?) help of my mother-in-law. The counselers aren't making me feel all that great about dumping my special needs child on them (maybe its just my perception, but they have NOTHING positive to say) but he deserves camp, he's worked VERY hard to learn to act as appropriately as he can so that he can do these things. Whew.. two days down.. three to go...

I don't talk about my children a lot on facebook.. I post about all of the crazy stuff and partying that we do, but I do post pictures and videos of our adventures, so join me there if you can. Again, I'm just completely not prepared for this time in my life, and I can't even begin to write and blog about it right now. If you are truly curious, and a member of my family or a friend within driving distance, just call and come by the house, plan us a camping trip, or give me a call to chat. I'll give you an earful, but I'm toning down the "in real life" dialoge about my children and what's going on with them. I'm learning that that will polarize people, and its lonely enough already sometimes.

The Thingamifling was a success. If you were there, I hope you had a good time.. if you weren't you missed a good time.

Goodnight, and don't expect a lot of updates until something medical happens.

Summer vacation and Planning for next school year.

This weekend we had a wonderful treat. Kevin and Arianne, Donovan and Ethan came up to our house on Friday night, then we all left and went camping at Cloudland Canyon State Park on Saturday night. Much much fun was had.. it was Donovan and Ethan's first camping trip and they did AMAZING. We never have a bad time when we hang out with that bunch. We love you guys, thanks for being our friends.

Here's pics: http://www.flickr.com/photos/56083521@N00/sets/72157624121298620/

Manny is getting a little easier to take on these types of trips, although he's still exhausting and takes constant supervision because he wants nothing more than to escape and run down the street. Still, he has started to respond to us a little bit when we tell him to stay close. Its something, and I'm just happy that he's showing signs that he understands us. His inability to sleep carries over to camping, and he woke up around 3 AM.. which, coincidentally was about the time I went to bed. We just resign ourselves to the fact that we won't sleep when we go camping. Its the price we pay to do what we love.

This morning I went to meet Jake's special ed teacher and my cousin Amber, his speech teacher at Westside elementary to check out their Kindergarten program and meet the special education teacher there. They have a really nice program and really a very very nice school. Then, this afternoon I met the ladies again at Beaverdale and I was SUPER impressed. I met Ms. Nancy, the person who oversees the special autism class there. Amber, Micaela and I toured the school and then went back to Ms. Nancy's class. I was getting very excited about this school, which seems to be quite forward-thinking and I was really surprised to find such a place nestled way out in the middle of nowhere-East-Whitfield. Ms. Nancy began speaking to me privately and said "Well, I've only observed Jake for one day, but I don't think he's ready for kindergarten, and here's why..." My heart sank. There are really no other options for him other than repeating Pioneer headstart again, and I KNOW he's bored with that and needs more challenges. I thought she was saying that he wasn't ready for her program, but that's not what she meant at all. I think she was quelling my enthusiasm that Jake might be ready for going to the Kindergarten classroom for much of the day. She disagrees (which is fine, since I really have no idea what a kindergarten class looks like anyway). She thinks that Jake SHOULD come to her class, but with the expectancy that he is going to need a lot of help, and may spend much of his time working with her or her assistant. He needs to work on being able to sit still and concentrate for more than a few minutes at a time, among other things. The prospect being that this year be a "practice" year of kindergarten, with the expectation that he will repeat K again next year. I am happy with that.

I have only one concern about him going to a school that is so far away, and that is that if he rides the bus, it will come at some ungodly hour like 6 AM.. which will be hard. We can drive him, but the school is about a half hour away, and that can get tedious and very expensive. But honestly, as far as I can tell right now, transportation is the ONLY concern and that's just a matter of convenience and not worth giving up such an amazing opportunity for Jake. While Westside is really nice, I really think that Beaverdale is more specialized and exactly what Jake needs.

I will be going to Pioneer headstart for an arena meeting with about 10 people or so who seem to care a lot about my son at 7:30 on Wednesday morning. I will have both kids in tow, because childcare just isn't in the cards that day. I'll tell them YES to Beaverdale Elementary, and I'll sign a bunch of papers and hopefully someone will hold Manny for me for part of the time.

The frenzy of meetings to coordinate the next step in Jake's education has fallen at an interesting time. Sunday I went to the Chattanooga Market as a consumer (SO much fun!.. I had no idea what it felt like just to go and SHOP) and then realized that the big two-day "Beast Feast" is this weekend. Several acts that I want to see will be playing, and it is a great opportunity to vend and make some money. Despite the fact that I'm very understocked, I decided to take it on, and I RSVP'd. I sewed every spare second that I wasn't at school meetings today, and will continue to sneak in any time I can the rest of the week. Sam came and sewed for me today, and I've asked Sherlene to help me with some finishing work (Thank you guys.. SERIOUSLY.. THANK YOU!). This weekend will be a lot of long hours and hard work, but hopefully it will pay off. Next weekend is the Thingamifling! Oh I do love the beginning of summer.

We haven't even told Jake about the Thingamifling. His "actual" birthday is Sunday, which he will spend with Mom (thanks Mom!) while Steve comes up to the market with me. Even though I'm not touting "the fling" as his birthday party, I will probably get him a chocolate cake from Greenlife Grocery and make sure he gets a song and some candle blowing going on sometime during the fling.

Tomorrow marks the one year anniversary of the day that the nurse called me and told me that they found a tumor on Manny's brain. A lot has happened in a year. My mind has changed so much over the course of that year. I can't even describe how EVERYTHING has changed.. my children, my relationship with my husband, my relationship with everything. Things went down.. they went WAY down, but they're coming up again, in a wonderful way. Manny is due another MRI in June, according to the doctors, however.. I will probably postpone that until closer to his birthday. I might get criticism for that, however.. sometimes what we don't know doesn't hurt us, and so far my mommy gut has been pretty dead-on. I think we'll ride this wave of O.K.-ness through the summer unless something changes.

The 'fling will be our practice session this year. We hope to turn it into a benefit for NF1 research in the future, and with the help of some very special friends, I think it can happen. If you would like an invite or more information, just email me at bratsacksbaby@yahoo.com BAREFOOT NELLIE! YEEEHAWW!

Well Manny is finally asleep (he's trading waking up all night for staying up until midnight the past few days, which is actually slightly more desire able). I am going to follow him.

Update

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.

A sad video, and a happy one

I took a video thursday to try to illustrate how worked up and anxious Jake has been lately. This isn't a tantrum, this is how he has been acting at home for a couple of weeks. The high pitched "uhhh uhhh uhhhh" was pretty much a constant. Just a little ball of nerves. Everything is "scary." I know this is a long one, and hard to watch. A couple of things to notice: His unusual language pattern "No broke on the school!" (I'm going to break the school? Maybe?) He makes an "explosion" sound and sign when he gets worked up talking about school to demonstrate how much he doesn't want to go to school. Random sentences "Want some helicopter." Oh, and he has been eating Mommy's dark chocolate hence the Joker mouth.



Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:


At least he's quiet.

Deep cleansing breath.

I've been run down...

I can't believe that its been over a month since I blogged. My dad actually wrote me an email and asked if I had moved my webpage. Honestly, facebook is fun, and I love posting about our antics and having our experience validated by my friends, but I post the less exciting details here. I don't even know what to say about what has been going on this month, its been hectic, there is no schedule,....

Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?


Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.

Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :

http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html

Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).

One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....

Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....

The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.

At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).

We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...

I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.

I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.

Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.

While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."

"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)

she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."

I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.


Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.

Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.

Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)

Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.


Thats the best I can do to sum up a whole month :) Cheers.

Another BCW meeting

Yesterday Ellen (service coordinator) and Susan ("former" OT) came to our house for another meeting to determine what services Manny will get from Babies Can't wait and for an evaluation. Ellen said that an evaluation is needed any time that a child shows regression. I opted to decline Susan's services. From what I can tell, she comes to Dalton twice per month, on two days that she determines a day or two in advance, and if that doesn't fit within the parent's schedule, then they must wait another two weeks. She doesn't come any other times. Unfortunately, she's the only OT that the entire area has, and that area is large. I was also offered once-per-week OT in a location a little over one hour away. I also declined that. They were able to offer a special instructor, a special education teacher in our area for over 30 years. I can't remember her first name at the moment. Her schedule is full until March, but after that she will be able to see Manny once per week either at school or here at my house. She is local (just up the road, actually), and it will be suggested to her that, in the event of a cancellation, she try to see Manny twice per week.

I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.

Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.

I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.

I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.

Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.

Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.

OT Evaluation with Cindy

Because I made Manny's appointment at 11:30, I let Cindy know, upon arrival, that I would need to leave right at or a few minutes before 12:30, so I could be sure to be home when Jake got off of the bus. She threw some paperwork at me, and I worked on that while she filled out an assessment, asked questions, watched Manny, and we talked. Pretty soon she said "I will cut to the chase, I know you well and feel like we can just jump in here."

(Lay it on me, I'm more than ready.)

According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.

(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)

Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.

(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)

Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.

Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"

Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!

Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.

And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."

(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)

Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."


As if this post isn't long enough, I am going to brag about my first-born for a moment.

I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:

"He sat during circle time and participated very well."

"He is following directions and cleaning up when asked."

"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "

"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"

Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.

Look at that referencing, the anticipation, the shared experience... Thats my boy!

Small Update

Ellen, Manny's service coordinator with Babies Can't Wait, called on Monday. She said that she was meeting with "the team" Tuesday (yesterday) to discuss Manny's services. I explained my frustrations so far. She said that she is going to discuss my suggestions that A) we get compensation for the OT appointments that have been missed and B) set Manny up with either speech therapy or a special instructor to come weekly. She again stated that we can not do OT with Cindy AND with the state. I have since found out that this is not true and that we are entitled to help from the State regardless of what we are doing privately. She said that she will be calling me today to update me on what they decided, and I plan on bringing this up. I can understand BCW's delimma, and their desire to keep money in the program and give it to people who are more "deserving" of services than we are, however I would prefer that at least one person be honest with me. I simply wish that I wouldn't have wasted Manny's precious time waiting on a program that was supposed to help my son, not simply give lip service to what they are supposed to do.

Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.

Ok, putting my head down and walking into the wind.....

Second Rate Citizens

Manny was accepted to Babies Can't Wait at the beginning of September. I was told at the time that the OT was out of town, and it would be close to a month before his first visit. I'm used to waiting months for anything to happen, so this didn't sound odd to me at all. Since that time Manny has had two visits from the Occupational therapist, who cancelled twice, Manny was sick once, and then I did not hear from her for two months. I called the service coordinator at the beginning of January and voiced my concerns.

Susan, the OT called me one day last week and said that she was yet again out of town, but she set up an appointment for Manny for Friday February 5th. That would be 8 weeks from his last scheduled appointment, which was also cancelled. She said she'd had issues with her mother in Florida, and we had had one day of in climate weather as well.

During those few months that Manny has received no services, his abilities have declined dramatically. As I have written before, his eye contact is almost nonexistent, any spoken language that remained has disappeared, and he has stopped using sign language. Would that be different should he have received OT during this time? I don't know. I guess I can add that to the list of questions that I will ask myself every day for the rest of my life. Every bit of literature that I read states that early intervention is the KEY to success for these children, yet, getting services is a nightmare.

At this point I told Steve I couldn't take one more day of doing nothing for my son. We decided to seek services through Cindy, even if we had to pay out of pocket (approx $400 per month). I called Linda, Cindy's receptionist, and she called me back promptly, saying that all I needed was a prescription from Dr. Michaels. After a half dozen phone calls to Dr. Michaels' office and no response, I finally had to do what I hate doing, calling and making a complete jack-ass out of myself, crying on the phone to the receptionist and basically threatening to "come down there" if she sent me to voicemail one more time. After 2 weeks of calling and getting no response, my jack-ass sort of behavior got them to not only call me back within 20 minutes, but it got a prescription written up and a staff member to personally walk the prescription over to Linda's office. Sheesh. Now I have an appointment on Wednesday with Cindy.

To be fair, Susan (the State OT) left a message with me yesterday, but our land-line was out of order and I didn't get the message. She called today and I answered and she wanted to come see Manny tomorrow. Unfortunately, I have a zillion things lined up for tomorrow and had lined up childcare for Manny. From what I gathered, it was tomorrow or nothing, and she now said that she would be out of town for another week and a half after that. She says that she doesn't recall calling me and making an appointment for the 5th.

At that point I sort of lost it, telling her that I am not a stay-at-home mom. Even though I work at home, I actually do have a job. I need to know more than one day in advance that she is coming. On the day that I DO have an appointment with her, I promise that every attempt, barring illness or fire, will be made to be respectful of her time. I explained that it felt like, because of one mistake on my part, that I had been written off as someone who wasn't going to be respectful of her time. I told her about Manny's regressions, that I was basically in a panic to get SOME sort of help for my son. While I don't blame her for having her own family/car/weather issues, that still doesn't help Manny. I mentioned that I was trying to get him in with Cindy. Of course she told me that I could not do private OT AND state OT. She also mentioned that, because cases like mine where the parents have insurance are such a "headache" and the paperwork was a "nightmare" she had made the choice not to even bill for Manny. "So you aren't getting paid anything to see Manny?" Exactly how am I supposed to feel about that? Well, you can imagine. It was time to go get Manny from school, I told her I had to go and hung up.

I tried not to sob uncontrollably while I was picking up Manny.. it didn't work. Luckily Manny's teacher has an autistic son, so all I had to tell her was that I was being blown off by the State OT and she patted my back and said that she understands.

Later Susan called back and attempted to smooth things over. I don't blame her, exactly.. however I do feel like our area would probably be better off if she would quit, leaving the State to have to pay for services from someone who actually has time and motivation to do the job, instead of leaving us to feel like we're just being strung along until the child is three years old. I really feel like Susan just wanted to make sure I didn't think that because "insurance cases like mine are such a huge headache" that was why she hasn't really bothered about Manny, or even attempted to call and let me know why she wasn't seeing him. It really didn't work. I'm trying not to be one-sided about this, but I'm the parent watching my child's abilities go in the toilet every day. She also offered to come to see him tonight, "late, like 8 PM." I'm sure, by refusing that, because that's his and Jake's bedtime, that I was once again trashing our chances of getting any state help for paying for his OT.

I'm not angry at Susan or the people at Babies Can't Wait (well, obviously babies CAN wait.. for a very very long time), but I'm completely and utterly disgusted with the system. I worry all the time that my special children will be treated as second rate citizens when they are older should they become special needs adults. I don't really have to wonder, as already I feel like we are treated like people who are just trying to mooch off of the system. The fact that Steve and I have a decent income between us many times only makes it worse. We can't afford to pay for all of the care that isn't paid for by our insurance, however the fact that we HAVE insurance causes the system to work even less for our children.

I'm tired of fighting. Maybe I'm not doing the right thing for those who will follow us in struggling with Babies Can't Wait by giving up, but we have to do the best we can for Manny. The ONLY gift that I can give him right now to ensure that he is the best that he can be is the right services and help RIGHT NOW. I simply have no other choice other than to get him real services with a good occupational therapist, EVERY week, not every other week.. maybe.. if she has time for Manny. I will write a letter of due process and try to get BCW to pay for those OT appointments that have not been provided through them since he was accepted, and will continue to get OT with Cindy, someone who I KNOW is on our side and who we can trust.

Super Powers

*****


I haven't written a lot about my Jake lately. I've been too busy drowning in my own bullshit. Sometimes curious people ask if Jake can "do things." You know, like Rain Man or the autistic man who can draw cityscapes after seeing a brief Ariel view of a city. I call them superpowers, and yes, he has quite a few of them, way too many to showcase here, but I will try.

***Warning: This is one of those posts that is too long and includes way too many pictures and/or videos, and took me weeks or months to put together. It probably won't be interesting to anybody but some Canadians that like us for some reason (and you know who you are). Family members who are waiting for a shout out should probably steer clear.***

And if you aren't into all of the artwork and photos, scroll to the bottom for a more traditional HALLELUJAH moment.

On to the fun stuff:

I'm not sure how many pictures of Jake's drawing and painting I have posted here on the blog (I get confused, because so much is posted real-time on facebook), but his drawing ability has honestly leveled out a little, and, as far as I know (and I know little, having very little to compare to) I *think* that his drawing is becoming more age-typical. Lately his focus is on letters and numbers. He has lost a lot of his interest in drawing and tends to simply write words, letters and numbers.

Many times, with children on the spectrum, there is a lot of concern when a child has advanced reading ability, whether or not they are actually comprehending the words, or simply regurgitating something that they have memorized. Yes, they can spell "C-A-T, cat" because they saw it on the television, but they don't make a connection between the word "cat" and the actual animal or drawn figure. With Jake, it has been proven over and over that this is not the case. He has drawn numerous figures himself after writing a word, so at least we know that his labeling ability expands to written nouns and the objects. Also, Jake can write words, sight-read them, and most recently (I just discovered) he can hear a word spelled and identify it.

I love taking videos of Jake and these interactions, especially because I always learn something or see something I didn't see before. At the beginning he finishes a word for me (what we were doing before I went to get the camera, but he wouldn't repeat it). Then, I begin to spell words for him. When I spell "D-O-G" he first says "clifford" (a dog cartoon character, of course), then he answers correctly, then says "Poo" (our old dog who died Christmas week). I didn't notice at the time, but watching the video I realize that he was giving me examples of dogs that he knew. He even quietly says "Poo a dog" or "Poo is a dog," and I don't even notice. It really makes me wonder what else he says that I don't notice.

Here is the video, he shows his knowledge of mostly 3 letters words, with a few four and even a couple of 5 letter words. He knows a TON, though getting him to answer consistently is still an issue:



His superpowers are amazing, and make for great conversation, but when I'm not in such an optimistic mood, I will call them "party tricks." I won't focus too much on that now, becuase he really is getting better at the things that he is deficient in such as social interaction, empathy, etc. He still has a very very long way to go. I didn't teach him ONE SINGLE THING that I am demonstrating here, not even the spelling. He simply learns that from TV and video games. The things that most children will struggle with come naturally to Jake. Learning to realize that he's hurt someone's feelings, or that making other people happy is important is something that he will have to be taught, and there are only a few people on the planet that really really good at teaching those things to a child.. and I'm afraid that I'm not one of them. The ones who do it professionally are usually regarded as kooks and/or they charge a lot of money to teach.


Jake has been taking pictures for quite a while. I've scattered pictures that he's taken through this post, and will simply list some below. I couldn't remember if any of these have made it to previous blog posts, and I apologize if they have. Also, if you're a friend on facebook, you've probably seen all of this as it happened.. sorry. Despite the fact that we invested a pretty penny into my "good" camera, after a few episodes of Jake sneaking off with it, I just can't deny him access to the camera. Often I find these pictures when I download some photos of bags for my store. Other times I give him the camera, when we are out in the woods, in the city, or in the backyard. His perspective is definitely interesting.

(all photos in this post were one hundred percent Jake's own.. with absolutely NO coaching.. sometimes we didn't even know he was taking them. Out of the house he was being supervised closely, but allowed to choose his own subject matter)











There are so many more nice pictures on my computer somewhere, but I am impatient. I will definitely be handing the camera over to Jake during our various outings this spring. I have insurance on the thing, and what could be more priceless than pictures taken by my son. It doesn't hurt that he actually knows how to frame pictures. I have already handed over my old terrible digital, and have contemplated getting him one of those children's cameras. Unfortunately, he is impatient like any other child (or me, when it comes to cameras) and I would rather risk my camera to get his perspective in good quality.

Yesterday Jake was running around with my camera, as usual. He had finished eating dinner and Steve had just returned home, so we were thankful that he was occupied while Steve and I ate. We did not know that the camera was on the moving picture video setting, so there were a stream of disjointed and few-second-long films on the camera. However, these two stood out as consecutive pieces... Maybe I should try to explain video to him a little more so that he can capture more funny episodes like this. Again, I thought he was just taking pictures:

(a note: he calls my bottle of nutritional yeast "cheese")


More superpowers to come.

Ok.. The Big Finish... and way TMI.....

Here is a video of Jake acting pretty much like a normal 4 year old. He found a pair of my very favorite hand-knitted socks (thanks Ariane) and liked how slippery they were. He called the floor "ice" and even referenced me by looking right at me (although I've found that sometimes the best way to look into my childrens' eyes is to look through a camera lense, because they look at the CAMERA, even though they both avoid eye contact). At the end of the video he answers two questions: "What is your name." and "How old are you." Two years worth of speech therapy, a point where he answered the first question for a couple of weeks followed by a loss of that skill... and now FINALLY, he answers it consistently.... I can now prove that he is my child if he throws a tantrum in an airport.




The last amazing feat has no pictures, and you will be glad of that, I'm sure. Potty training... such a subject with any new parents, quickly became something that Steve and I didn't talk about with other people. Jake never had any issue with being wet or soiled as an infant or toddler, that is, he wouldn't tell us if he was wet or dirty. He finally started telling us around the age of three and a half. When it became WAY past time for him to begin potty training, we tried to coax him to the potty. He was terrified, literally terrified of the toilet and even of his potty chair. Pressure to use the toilet only resulted in making matters worse, and, since we are human, frustration and scolding made things even worse than that. Jake went through a phase of feces smearing that I won't even give the details of. These sorts of things will make you feel pretty much like the worst parent in the world and I'll admit that even lied about it to my friends, saying that he'd stopped. Many typical children never exhibit these behaviors, and even if they do, its not a "behavior" and more of an accident or a temporary phase.

Jake did not find interest in the toilet until he was just four, when he started peeing in the potty. Once that was accomplished, he pretty much NEVER had another accident. Pee went in the potty.. GOT it.. check. ("Wapner at eight.") Poop was another story. Add into this scenario that we have a PEE trained child who will pee in the potty if he's in underwear, or in his diaper if he's in a pull-up.. and.. jeez, what to do?? In the past year we have went from no bowel control, including outings or school, to a terrific fear of sitting on ANY potty, including the kiddie toilet, to a child who could be bribed to sit on the potty if we gave him his I-touch (yeah yeah.. HIS I touch.. only to be played with ON the potty). I feel like I'm tempting fate by even bragging about this, but Jake has pooped on the potty (unprompted.. meaning I didn't threaten to freak out) for three days in a row. Please please PLEASE let this be similar to when he figured out that pee went in the potty. He is using the kiddie potty, and, because he is a creature of habit, he will often go and sit on the potty to play his I-touch.. which I am sure will be another struggle in the future, but it is progress.. sweet sweet progress. Considering the intense pressure that has been put on me, as a mother, by my family members since he was 2 years old to potty train.. I can finally say.. SEE! I did it.... maybe....

I'm not good at writing conclusions anymore, because, when it comes to my kids, there just isn't one. There's so much more to talk about, but I have to end somehow, so I will.

Its gonna be cold cold cold cold.....

In case you haven't heard, its been cold here in Georgia. I think that the cold has decided to touch every corner of the U.S.A this winter. I'm thawing out and recovering from the holidays and thinking a lot. I'm hoping to make some changes in the near future. I have been putting off writing all of this down. Once I start, it may be hard to stop.

Manny went to Dalton Ear, Nose and Throat on Wednesday (1/6). I think that I pretty much flew through the holiday season riding on a magic carpet of hope that this appointment would go a certain way. Well, I didn't fly THAT high, because I was still a ball of stress that ran from as much reality as I could, but I take what I can get. I began to believe that maybe Manny's regression and delays coincided with our long season of illness last year, where Manny lost so much weight from virus after virus. That this illness had possibly caused some ear issues, maybe even inner ear issues, explaining his ataxia, and hearing loss, explaining his speech regression. That it was possible that all he needs are tubes in his ears to release some of the negative pressure that the hearing tests were showing (well, might have been showing.. but he wouldn't be still)... and he will be able to miraculously recover and with a little bit of speech and OT, he'll begin to speak and develop normally. I forgot to worry about other things I was noticing, I tried to believe that everything would be fixed once they fixed his hearing, that I suddenly thought for SURE was the main issue. The Hemi/Onc DID say that sometimes people have NF1 and NEVER know it, even with tumors. Doesn't that mean that the ataxia, speech regression, and the discovery of the tumors might all be coincidence, and unrelated to each other? It all made SO much sense, if you thought about it.. really hard, and forgot about the physical and muscle tone regression, milestones not being met....but I digress. Back to the real story.

Dr. Dingus at Dalton Ear Nose and throat was so very nice. His staff were some of the nicest people I'd ever met. First he pulled a big hunk of wax out of Manny's ear, ick! He assured me that it wasn't causing any hearing issues, and probably little if any discomfort (dangit.. I was hoping he'd say "this is probably what keeps him from sleeping every night!"). He then handed me over to his technician who tested negative pressure. Very little, if any, was detected (I guess lots of negative pressure would tell us if he had fluid that could be relieved with tubes, no such luck). Manny had a complete melt-down after his initial exam, and I tried a few different positions in the carrier and he finally went to sleep. The tech was able to do a test to check his cochlear function without sedation, thank goodness. It was fine. His ears, physically, are functioning perfectly. I'm supposed to be happy about this.

(ETA: I wish I could remember the tech's name (she may have been an Audiologist.. but I forget everything, I hadn't slept that night). She was so sweet, a nice redhaired lady if you ever come into contact with her. She kept asking me if we had checked this or that or had this or that test done, and seemed surprised that he was so old and that we had not . I finally said "I constantly run into professionals that ask me why we haven't done this or that test... only 6 months ago we heard the word 'brain tumor.' Please forgive us because we're doing the best that we can." She put her hand firmly on my shoulder and squeezed and said "I know you are, I didn't think of that, and I think you are doing fine. Please know that I meant no criticism." I haven't teared up so far in the writing of this post, but I'm tempted now. Its so nice to run across people who are sensitive and compassionate. What a nice place.)



Dr. Dingus dismissed us with a prescription to have another test run, one to check to see if the brain is receiving the information when Manny's ears hear. Manny would need to be sedated. I can go back to Scottish Rite to have this test run. I don't think that it is necessary, however, what am I to do?

Why don't I think that it is necessary? I think that Manny is autistic, like his brother. I finally allowed my conscious mind to be hit with this news on Thursday night while we were having dinner at the Mexican Place.

Even the two or three words that Manny held onto have long gone. He still says "tickle tickle".. sometimes, and a low "chgghchgga" when he plays with trains, but other than that, even his sign language is completely gone.

He has begun to lay in the floor on his back and either stare at the wall or "nothing" or play with one particular kitchen object (like brother). He rarely makes eye contact and is oblivious to his surroundings. He doesn't bring things to show them to us, and would rather lay in a corner and bang his feet on the wall. When he's not engaging in solitary behavior he wants to be held tightly like an infant.. and little in between. Lately I've started to grasp at straws and try to get him to make ANY social engagement, and can get him to do a certain tongue-raspberry type game with me, but that is it. I tend to say to myself "oh no! there he is! I was wrong" but I know better now.. these are just glimpses of "normalcy".. false pieces of hope that I've been seeing with Jake since he was little.

Why did my heart sink AT the Mexican Place? I realized right then and there.. this is it.. this is autism times two. A little baby girl came in, 18 or 19 months old, two at the oldest. Her mother put her in the high chair and said "put your bink on the table." She complied. Then the little girl pointed at the diaper bag and said "ippy! ippy mik!" Her mom gave her the sippy of milk. Then Manny screeched and she turned her head and stared at Manny. I waved and her and she waved back and smiled. I tried to show Manny the baby... no dice. He just wriggled and tried to get down. He's never waved at another baby. Jake is learning to do it. He's also never followed a direction, ever.. not "put that down" or "go pick up the...". Nor has he ever pointed at something, named it by name and asked for it. At this point even his sign language is completely gone. Manny is 28 months old and has the capacity of a 10-12 month old in almost every skill, speech, gross motor, fine motor, and social, and is regressing.

Autism would explain Manny's regression, and the fact that none of his issues can be physically explained by his tumors or his NF1. It would also explain why he is so very very delayed compared to other children who are only affected my NF1. He is at "the age" where many children who develop normally until age two, or who show very mild global delays are often seen to suddenly exhibit more and more symptoms of autism. Male siblings of children with autism have a 1 in 3 chance of being autistic. 1 in about every 5,000 people have NF1. I should probably buy more lottery tickets.

Please don't tell me what a great mother I am, I haven't been doing a good job at all. I yell at my kids, I whack them from time to time... I have no patience. Me, someone who has always wished I had the patience for homeschooling, is praying for the heat to be fixed in Jake's building so that he can go back to school. I'm on a mission to lose weight, even though that taking care of that will take even MORE of my time away from my family. I ran fast and far from "The Holidays" and almost succeeded, though its left me with more guilt than I can handle. Manny is getting exactly NO services from Babies can't Wait.. I haven't heard from the OT in 5 weeks. I love my husband, but I am having a terrible time giving him anything but a stressed out crazy person.

Thank you, family, for our gifts this season. I have grand delusions of writing each and every one of you with pictures, but please don't hold me to it.


Since this is the blog-post that never ends.. Here are some pictures from today. It was actually one of the most pleasant days we've had lately as a family, doing what we "used to" do, before everything went to hell, everybody got sick, everybody got pissed of, and everybody needed a doctor's appointment every week. We headed out towards Lafayette, and went to a spring covered cave entrance. Jake was extremely upset that we weren't going swimming (it was 20 degrees) and tried to undress right there.

I've been planning this post for a couple of weeks, and it didn't come out nearly how I wanted it to. I cried a LOT just putting my thoughts together, and almost not at all writing this.