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.