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.