Sunday, December 21, 2008

Merry Christmas George


Today was our family gathering for Christmas at my mothers house for breakfast. Jake was in a particularly good mood, very social and VERY loud. Everything he said had to be screamed, but at least he didn't hide in the next room like he can do sometimes with groups of people. Jake has finally figured out the concept of "opening presents" and was excited to do so.



My aunt Carol definitely gets the prize for best presents this year, even if we had to do a little trading out. For Jake there was a Fishing Puzzle with Fishing Pole just like one that Cindy uses at OT. Also Curious George at the Aquarium book which Jake instantly asked Steve to read, then me. Jake loves George AND the Aquarium. Jake also got a plush clown fish puppet, however he wasn't really interested in that. Manny got some wonderful pajamas (he really needed some) and a Curious George stuffed toy. Hmm... can you guess what Jake's favorite present was? You guessed it: the George monkey meant for Manny (don't worry, Aunt Carol, the fish puppet made a great trade and makes Manny laugh and giggle).

I guess it might not be such a big deal about George the monkey, however, unlike typical children, Jake has never formed an attachment to many "appropriate" toys. His attachments are less socially acceptable and are to things like stopsigns and spatulas. Children practice appropriate social behaviors with toys like dolls and stuffed animals and that is why pretend play is so important. Jake has rarely if ever hugged a doll, made a toy dog run across the room going "woof woof" and actually only recently has played with cars or trains other than to spin the wheels or flip open moving parts.

George monkey had to ride home in Jake's lap on the way home, and was missed when we left him in the car. He was presented to me to give a kiss. Daddy was asked to make a portriat of Jake, George and me. Then it was neccessary to dress George in pajamas (two different sets, as the first one wasn't quite right), and then George was put to bed and covered with a blanket.




We never know when these little miracles might happen, or where they come from. I just hope that the Buzz Lightyear doll that we got for Jake doesn't thwart George monkey out of the limelight just like he did Woody in "A Toy Story" (Jake's current favorite film, and a possible catalyst to his recent interest in playing with toys in a more normal way).




Jake and Manny also received two different leapfrog games from my Mom. The one for Jake is still a little old for him (as is the V-smile I got for him a year ago), but both children are loving the reading turtle that Mom got for Manny. I'll have plenty of video games put away for when either child asks for a system.

It was a nice Christmas celebration and it even fell on the Solstice. Thanks family.

Three days after solstice we will be leaving for South Georgia to stay with friends who have similar ideals and holiday practices to our own. I think it may just be one of the best winter holidays ever.

Friday, December 12, 2008

A breakthrough or two

I've expressed my frustration with Jake's pinching and such quite a bit here, but let me describe it a little more, just to give a good picture. I call it "pinching" but it was way beyond that. If I got a hug from Jake he would dig his fingers hard into my ribs. He would often run up and grab my arm and dig his fingers into me and sniff or lick my arm. If he was on the floor he might rake his fingers across the top of my foot. While riding in the shopping cart, if he becomes impatient, he might scratch the tops of my hands until they bled. While holding hands he would screw his forefinger and thumb around so that he could pinch the littlest bit of skin on my palm (if Dad and I were walking side by side holding his hands, he would only do it to my hand, not Dads). If he became frustrated with blocks he would run over and dig all of his nails into my upper arm and rake them downward.. even if I was at the computer and not involved in his game. As I've said before, he was doing this maybe 20-30 times in a 10 minute period (thats every 20 or 30 seconds or so) if we were playing together or working closely on a task. If he was playing alone and I was working, he would "only" do it every 4 or 5 minutes. He seemed to be "sneaky" about it, and sometimes I would yell out and Steve.. standing right there, would have no idea what had just happened, as Jake would slip his hands behind me or under my legs if I were sitting, or ask for a "hug" then sneak attack with his digging fingernails.

It was maddening. I had tried to do things suggested by his therapist, but had pretty much resorted to slapping his hands, yelling "no" and "stop it." The more I tried to make him stop, the worse it would become. I was avoiding playing with him. When he would come towards me for a hug I would turn my back. If he ran at me while I was standing, I would put my knee out so that he ran into it with his chest. He would still "get me" but my jeans would get the worst of it. I was at a total loss as to what to do. I tried to ask Dr. Dunbar about it, but never really got that far.

So, yesterday, I was playing on Jake's bed with both boys. I was using some of the play tactics that we learned from Dr. Dunbar and having just an amazing time. Following Jake in his various vocalizations. Trying to "take part" in everything he said or did, even if it seemed meaningless or if it were stimming behavior. I didn't try to do an activity at all, we were just sitting on the bunkbed and I was jabbering like an idiot and being loud and overly expressive over every single word he said. He was laughing and giving me constant feedback and eye contact, yet was still going after me with his hands, mouth, feet and I was THIS close to getting frustrating and ending this wonderful interaction we were having before I lost my temper. Suddenly he grabbed my arm with both pinchy digging fingers, shoved his nose hard into my arm and sniffed loudly.

I did it back.. I grabbed his arm, dug my fingers in with matched ferocity and sniffed his arm.

He was very perplexed. Seconds later he dug his fingernails into the backs of my hands and scratched. I did it back. He actually paused, gave me good eye contact and a very unusual look. For the next half hour, every time he dug his fingers into the back of my knee, my ribcage, my crotch, I did the exact same thing back, trying to match the location and intensisty the best that I could. Some of it he didn't like. Sometimes he modeled me and said "STop it! stop pinching me." and sometimes he giggled if it were a really tickly spot, but he didn't seem to like it at all, and his reaction was very unusual.

Near the end of the playtime we were laying down next to each other pretending "sleep." I was tired of over-acting and my ability to smile constantly was coming to an end. Jake was doing his sweet, yet painful activity of digging his pinchy fingers into my mouth and cheeks and trying to get me to smile. I was doing it back with equally pinchy and pokey fingers. He was laughing, but somewhat uncomfortably. Something inside of that amazing brain of his was turning in a new way.

He's stopped doing it... almost completely. He touches me appropriatly. He still seems to have the need to touch me, but it is more pats and gently rubbing, not awful pinching. I cried real tears of joy later in the evening.

What made him stop? I have no idea. Did he think that I wasn't feeling anything when he did it? Did he think that I was yelling and acting nuts for no reason? Did he not even notice or know that he was doing it? I have no idea, but I just pray that it keeps working.

So.. in the last two days I am learning how to play with my child for the first time, and really enjoying because I am no longer under physical attack. Praise the universe.

Tuesday, December 9, 2008

Our visit with Dr. Deborah Dunbar, Ph.D.

This morning the house was awake at 5:15 AM, as usual. Manny woke up for a spell, which awakened Jake... Manny would have gone back to sleep only his brother was up and ready to rock. Steve was kind enough to stay up with the kids while I went back to bed. Steve usually falls asleep earlier than I do, while I stay up late working on my business and otherwise winding down. So, in this way we've managed to develop a lifestyle that keeps us from going completely insane with kids who get up long before we would like them to. It also pretty much keeps us from having any quality one on one (cough*phsycial) time together, unless we try really hard (which we do when we can).

We left for Atlanta at 10 AM, stopped for a quick fast food lunch and arrived at Dr. Dunbar's office just on time.

Dr. Dunbar greeted us personally in the waiting room. The first thing she told us was to just play with Jake in our normal way while she watched. Oh my, I feel the most inadequate when I try to play with Jake, I honestly just don't know how. Manny was making too much noise for her to hear Jake's voice, and, as usual with any appointment that is "for Jake" Manny gets the crap end of the stick because he can just be in the way. Steve took him out for a little while and Dr. Dunbar and I continued the assessment. Later on, I was able to put Manny in the SSC on my back and he hung out happily while Steve and I could both glean the benifits of the visit.

Dr. Dunbar gave us so much to think about. She showed us many ways to play with Jake that will eventually overcome his lack of engagement. She told us not to worry about his speech, as she feels that his speech is just fine and that his ability to label, his reading, writing, numbers, and other skills will always be there, and that we can always be proud of those. However we need focus on teaching him to engage others. He is only learning scripted language. The "real" language will come once he learns to engage a variety of people in a variety of situations.

There are 100 questions that I'd like to ask any expert with as much experience as Dr Dunbar for instance: will he ever potty train?, why is he pinching me?, what will he be like when he's older? Will he be able to live on his own without me? However, after we'd spent a lot of time playing and talking, Dr. Dunbar said "I have about 15-20 minutes, please tell me what you wish to accomplish with this visit and we will concentrate on that." We were made to realize that our very expensive therapy time was coming to an end. Lets cut to the chase.

I, as usual, choked back tears and asked "Please tell us how to play with our kid." I explained that I have been told that I must "engage" Jake for many many hours out of the day yet, I have no idea how to do that. Dr. Dunbar had already shown us examples of different approaches, and we were blown away. We were truly given some powerful tools today.

She went on to express (just like Cindy and other people who have worked with Jake have done) that we need to recruit other family members, friends, neighborhood teenagers, anybody on earth that can come and engage Jake besides us. She mentioned examples of funny and fun grandparents, cousins, uncles or other family members that might bring him special joy. I saw true dismay on Steve's face during this part of her assessment. Dr. Dunbar points out that, even though we do as much as we can, Jake must be exposed to different people in different situations on a ONE-ON-ONE basis. Something has to be done so that Jake has a variety of people in his everyday life. Not just his family here at home, and his teachers at school.

This evening I began putting out advertisements on craigslist and other forums for a part-time Nanny or babysitter. It would be worth the financial strain to get Jake the socialization that he needs. We are also hoping for Steve's parents to sell their house out-of-state and move here very soon. We have discussed our needs with Steve's mother and she seems to be on board to help us. Hopefully they can beat the market and sell their home. Jake seemed to benifit so much from her last visit. He truly has a connection with her even though she lives so far away.

All in all it was a wonderful day. After the visit with Dr. Dunbar we went to the Dekalb airport and watched the small planes take off and played on the playground. Everybody (including me) slept in the car while Steve drove back to Dalton. We went to the local sushi restaurant where both kids ate like crazy. Jake even uses his (kid adjusted) chopsticks like a pro and pigged out on seaweed salad, tempura shrimp and sweet potatoes. Both came home worn out and went to sleep.

We have a lot to think about. Steve seems to be absolutely thrilled with the knowledge that he gained today. I am equally thrilled to feel "on the same page" as my husband. I look forward to Jake's OT with Cindy as well as another visit with Dr. Dunbar in a few months.

P.S concerning Manny: Dr. Dunbar, though trying to "ignore" Manny because the session was "for Jake" kept using Manny's appropriate behavior as an example. That makes us feel very good about Manny's development. Between that and Manny's recent check-up with Dr. Michaels...I have decided not to worry so much about Manny's development as I have been (yeah right, easier blogged than done).

Saturday, November 29, 2008

Thanksgiving

We have a lot to be thankful for, especially the fact that we survived Thanksgiving. Steve and the boys were sick with a cold earlier in the week but seemed to be recovering. I came down with the cold on Wednesday morning and felt really crappy Thursday morning. I just had a bad feeling about Thanksgiving lunch with my family and called my mom to let her know that we weren't coming. My mommy gut instinct was dead on, because Jake started vomiting around noon. Manny fell sick later that evening. We had a scare with Manny passing a white stool (sign of liver distress) and I ended up calling T.C. Thompsons triage nurse to get some reassurance that I needn't rush him right in.

Friday was just more of the same.. puking, pooping, whining, and Mommy and Daddy feeling OK, so we ate the food that we had cooked and some that was brought to us by my Dad from the big Thanksgiving dinner. Friday afternoon the weather was nice, so Manny was allowed the treat of playing on the back porch while Mom and Dad watched and Jake slept. Manny's back was to us, so we didn't know what he was so interested in, a leaf or a stick? But no, it was a red wasp, warmed up from the sun, and the stupid thing stung him right on his index finger. After a dose of benadryl and a couple of hours of me hovering absolutely terrified that he'd have a reaction (my father and I are allergic to different degrees) he recovered and slept off the benadryl.

Today we packed up a still-somewhat-lethargic Manny, and an absolutely stir-crazy Jake and headed to St. Elmo for a quick run through at a small craft fair, then we headed to Greenlife Grocery to buy some yummies for dinner. Jake and Manny munched on a piece of pizza on the way home. I was just glad that they were finally eating.

Jake's days lately have been quite interesting. When he was sick he was quiet and cuddly, and when he had bouts of feeling well he has pinched and scratched me to the point of distraction. For some reason he needs "sensory input" (Cindy's words) and to get that he has to constantly touch, pinch, scratch and otherwise dig his fingers into my flesh. Cindy taught me to get his arms and shake or give firm "input" before he can dig at me to help control this, but it has backfired. Now he comes at me at different angles, digging into my calves, my buttocks, the tops of my feet if he is sitting on the floor. I have counted him doing this 20 or 30 times in a 10 minute period. If I sit or lay on the floor he throws his entire body at me. Cindy says that he does it to "regulate himself." I just really don't know what that means. But I do know that he seems to need to torture me in order to feel OK inside of his body. We also swing him, bounce him on a ball, throw him on the couch, built a ball-pit for him to roll around in and have otherwise tried to create "sensory input" therapy for him at home, with very limited success.

This weekend I made him a big batch of playdough to give him something else to pinch. It may have helped some, I really can't tell. I sit here and type, and he has been asleep for a few hours, and I can still feel the places where his nails have bitten into the tops of my hands. He also grabs my fingers and bends them back, something not so pleasant to someone with a bit of carpal tunnel from sewing/grooming/typing. I was very displeased this week when I remembered that Jake had no OT with Cindy. I want to beg her to help me with a way to MAKE HIM STOP this behaviour, yet, I have a feeling that I will be disappointed when she starts vaguely referring to a "sensory diet" and (being the truly sweet and understanding person that she is) offering her sympathy at my situation. I just want him to quit pinching me, and I sometimes just can't constrain myself and end up slapping at his hands all day and yelling at him to "STOP IT!"

Jake is such a sweet and loving little dude, and when I yell at him and slap at his hands he looks so hurt and whines and echos back "stooopp! stooop it!" and "no hurt the mommy." "mommy hug" and other things that otherwise make my heart ache. I want so bad to break into that head of his, but I just can't. I try to act hurt and "cry" when he hurts me.. hell, sometimes I DO cry, but usually only after losing my temper. The things he does that physically hurt me seem almost to be like an addiction or a drug to him. He used to grab and pull and hurt other people and children, grab strange adults and touch them inappropriately, and I thought it was a miracle when he finally stopped doing this as much. His teachers notice none of the behavior that I describe, and according to Mrs. K. he never scratches or pulls on anyone. All of that extra "regulating" energy is now focused on me. Steve even says that he experiences very little of it, but can see it as Jake pokes and scratches me. Part of me just feels like I should be grateful and accept the abuse as a blessing that I no longer have to constantly apologize or get kicked out of playgroups, but my own dislike of being touched outside of my comfort area is hard to ignore.

In case this post isn't long enough, I want to talk about Manny for just a moment. At 15 months he shows no signs of walking, has low muscle tone that seemed to appear all of the sudden over the past 2 months, and I am not sure that he is meeting his milestones. This past weekend, granted, he was sick, but he has also taken a liking to laying on his back and looking at objects (a la Jake) and though he has a word or two and more socially appropriate behavior than Jake did at the same age, I have noticed some skills that have appeared then disappeared. Jake had issues from a very early age and did not meet any milestones on time that I can remember and I do not believe that Jake has or had "regressive" type autism, from what I have been reading and researching. However, how can a mom of a child like Jake not be aware of the possibility that her second son may well regress? In all honesty, I believe that Manny will show more and more sensory issues as the next few months unfold. I write this now only becuase I WILL NOT go through being told that he "is fine, don't worry about it" again, when my gut says otherwise. I will be the happiest mommy alive if I am wrong. I WANT to be wrong. But I also want to get the right care as soon as possible if Manny needs it.

I didn't make a post on Thanksgiving day because I was too busy doing pukey laundry, but I want say that:

I am thankful for my husband, Steve, who came into my life at the exact perfect time and made me realize that Love wasn't a force to be reckoned with, it was just something that happens when its true.

I am thankful that my children are physically healthy and can smile and play and that they too know what love is, even if they don't say it out loud a lot.

I am thankful that we have good food, a house, cars that run well, places to go to have fun and friends to share with.

I am thankful for the internet for helping me gain knowledge that will help my family cope with whatever situations are thrown our way, have friendships that would not otherwise happen, and to keep up with family who would otherwise be remote and unreachable.

Monday, November 17, 2008

Looking Ahead


Again I've been tempted to erase some of my comments from my last blog, however I feel that its important to document the intense feelings that come with being a parent in general, not just he parent of a special needs child.

Lately I worry about Manny's low muscle tone more than anything, and spend a lot of time researching. Again, I am not very hopeful that he will not end up requiring some sort of early intervention. I have my eyes peeled.

This weekend we had some very special guests. A lady that I have been friends with for 3 years, but only online and through yahoo IM. We had not even talked on the phone until last week. Jake and I picked them up at the airport and he had a grand time there. She brought her youngest daughter with her, who is close to Jake's age and they had a heckuva time together. He asked about her tonight because he went to school and did not get to say goodbye. After I explained that she had gone he said and signed, "Bye bye, Lauren friend airport." It is the first time I've seen him sign "friend."

Today Jake's notebook from school said:

"Jake talked a lot today. He used more than one complete sentence "I don't want to do puzzles." [smile face] He really seems to enjoy school. I would keep trying to get him into St. Marks- if not this year, next year. He would love it."

I am hoping that this means that Jake's teachers are seeing Jake as having potential to perform in a more "typical" preschool environment. I met a few of his classmates at the fair fieldtrip and did notice that there were many children who seemed to have more severe disabilities than Jake seems to have. Bless the children that I met who are going to have a harder go at it, but I can't help but hope that this little note means that Jake might be "graduating" a bit from special education. He would still be able to receive speech therapy and we would continue Occupational Therapy as long as needed. Or.. maybe I'm reading too much into this little note :-)

Anyhow, I'm looking forward, and the future looks bright.

Tuesday, November 11, 2008

I am officially the worst mother in the world


Well, not really, but I'm sure someone would think so. Today was quite a day. Steve is off work this week so we took my van to the shop (door fell off track and will be fixed to the tune of $500) first thing this morning, then it was off to Cindy's for OT at 8:30. Last night Steve and I hung an eye bolt for making a baby sling swing for Jake to use as part of his "sensory diet." We brought the swing along with us to show Cindy. She was delighted and wants one for herself. The session went well, and I was glad that Steve was able to go with me so that he could ask some questions of his own and get answers first-hand from Cindy.

After OT it was time to cross the parking lot to go see Dr. Michaels for re-checks on both boys. As usual, there was over an hour wait in the lobby, followed by half that in the room, but sometimes it is worth it to see a very good Doctor, which Dr. Micheals certainly is. My hands shook and I had a hard time keeping it together in the waiting room. I didn't want to discuss vaccinations....

Dum dum dummmmmmmm....(enter the worst mother in the world)

Last night I spent a couple of hours crying and tearing myself up about vaccinations for Manny. Honestly, I really don't THINK that vaccines cause autism, however I am living with the guilt and the what-ifs that go with that. When Manny got his single shot of dtap, I drove home with terror in my heart, shaking, nauseated, basically saying to myself, "What have I done? What if it hurts him. What if I fucked him up? What if.. what if..." The problem is, children sometimes ARE hurt by vaccines. I am terrified, and my fear isn't just some irrational, uneducated drama caused by reading articles by Jennie McCarthy. I've seen vaccine reactions in animals when I was a vet tech. I've seen animals drop dead after a parvo shot. There are anti-vaccine people (I'm not one of them, I promise) out there who would probably say "How could you? How could you just give Jake 30something shots without thinking about it? How can you be such a cow? Are you the worst mother in the world?" Maybe?

On the other hand, there are terrible diseases out there that my son could catch. Dr. Michaels made several very well thought out, very intelligent points that, while I'm standing there, make perfect sense. He is OK with a delayed schedule, he is OK with Manny getting one shot at a time, hell, he's OK with no vaccinations at all. "I am here to help you make a decision, not to sway you one way or the other." But he also points out that children catch Meningitis and die or end up in a wheelchair. There are many many people who might say "How can you just ignore that these diseases are out there and risk these terrible terrible things that could happen to your child? Are you an uneducated hillbilly? Are you the worst mother in the world?" Yeah, dammit, probably.

Manny received no vaccinations today.

Dr. Michaels agreed with me in thinking that Manny's tone is a bit low. I didn't really want to hear that, even though I already knew it. To me Manny shows signs of sensory issues, but I haven't noticed any autistic symptoms yet. When Jake was Manny's age he had plenty of symptoms, and more and more were manifesting every day.

During the exam Dr. Michaels was concerned about Manny's spots. Manny was born with several birthmarks, very similar in size, shape and color to one I have on my ankle. More birthmarks appeared probably during the first 6 months of his life. He said that this was something to watch as a symptom of a disease called Neurofibromatosis. I thanked him for giving me something new to obsess over. I guess I didn't realize the seriousness of this disease until I came home and did some reading. This is a disease that you can not test for, but that manifests itself over the course of many years, sometimes not until puberty or early adulthood, and can range from mild to severe to life-threatening. It can cause disfigurement, pain, blindness, deafness, learning disabilities, tumors in any part of the body, and death. Of course, he could just have birthmarks. Up until today I have always loved his birthmarks, thinking that they were just the cutest thing I've ever seen. I am proud of them and tend to show them to people because they are so darned cute. A child with 5 or more cafe au lait spots should be watched very closely. He has many, even in the groin and armpit areas, areas of special concern. I don't have a good feeling about this. I have lost my ability to have an "it won't happen to me" attitude or an "ignore it and it will go away" outlook. Worrying about my baby for the next 20 years, or seeing symptoms show up, I wonder how I will stay afloat. A couple of people have already said "Oh, don't worry too much about it." Steve says that he just isn't the type to worry about that kind of thing until something happens with it. I will probably cease to talk about it much anymore. But I will probably think about it every day, and spend a few more minutes inspecting him every day. And, of course, it could just be birthmarks.


Moving on, we discussed Jake's current progress and the next steps. All of the blood tests were non-indicative of any metabolic disorders. We may end up doing genetic testing at a later time, and I told Dr. M that Jake will see Dr. Dunbar. He seemed satisfied with our course of action.

I feel like I am breathing underwater and fending off a nervous breakdown at this point. I sat around kind of pissed off and numb today. When I sit around and frown, Jake crawls into my lap and uses his pokey little fingers to shove the corners of my mouth up and says "Smile, Mommy!" I tried but eventually just told him to shove off. I blew off bellydance class and most of my nightly socializing for sheer lack of mental energy. I'm sort of surprised I wrote all of this. I yelled at my kids and made them cry because I just couldn't stand it any more. Whether or not I vaccinate really doesn't make me the worst mother in the world. Wishing sometimes that I had skipped the whole motherhood thing altogether does.

Thursday, November 6, 2008

How its all good.

The day I realized that I could not deny Jake's symptoms any longer and also the day that I realized that he truly was autistic was the day I learned what stimming was. I learned, of all things, while browsing youtube. I had just read a page on PDD-NOS on the JanyaGirl Website. It was late at night and I had been reading and reading and finally it looked like I was on the right track. Being on the right track wasn't making me happy at all, and I had this awful sinking feeling in my stomach, a feeling I've become quite familiar with these past three years. I started typing things into youtube and came across several videos that showed children who exhibited symptoms similar to Jake's. Then I came across this video of a boy stimming. My whole body went numb. It stayed that way for several weeks. I knew then not only that Jake was definitely autistic, but that I had the proof I needed to convince Steve. Manny was a newborn and "overwhelmed" doesn't even begin to describe how I felt.

A few weeks later, after I had collected my thoughts, I showed my husband a collection of the videos that I had found. I think the effect on him was similar, but I was finally able to convince him that we needed to move forward with diagnosing Jake and getting him some help.

Jake stims daily and sometimes all day, and I know that I complain about it quite a bit, simply because it is annoying, worrisome, and a constant reminder that Jake has neurological issues. But, truth be told, he usually does it when he is tired, bored, overstimulated or basically has nothing else to do. Its hard to make people who only see him when he's out in the world, playing and having fun, understand how weird and scary these behaviors can be to a parent. Watching him do this makes me want to live inside of his head for just a little while and see how he views the world, and what makes him do these things. I am beginning to be able to spot objects and circumstances that I know will make him start stimming, and avoid them. I collected a few video clips and made a little movie so that you can see what Jake's stimming looks like. Different kids do different things, and this is only an example of a few of Jake's many stereotyped behaviors.



I don't know what other people feel when they watch those videos. Pity? Fright? Maybe they say "I don't get it.. he's doing what? He looks fine to me." But it doesn't bother me a whole lot to watch the videos, since I see him do it every single day. Just like I said at the beginning of the video, its important for you to know that the stimming isn't everything that there is to my boy. There's so much more.

Today his note from his teacher sums up a lot of who Jake really is:

"I believe he is the happiest child that has ever come to my class! The friendliest too. He smiles at and talks to everyone here. Today he made a leaf book, worked on puzzles, played a shape and color game on the computer, and played with some student helpers from the middle school He had a great morning - lots of words. -KH"

You just can't know how proud that makes me. Jake really is a happy kid who loves life and so many things about it.

I have have been trying to teach Jake to be polite in many places and teaching him the appropriate times to say Please and Thank you and other niceties. Almost every time I have to prompt him either with sign language or by saying "Jake, say 'thank you.'" or "Jake.. please say 'I'm sorry." It was a big accomplishment for him to ever respond to the command "Say....." and it has been about a year since I started working on this. Today before he left the lunch table he said "All done. Thank you Mommy." without being prompted at all. My little boy is learning to be polite.

Polite, kind, nice, and happy. These are really the basics of a successful life as far as I am concerned. I am so proud of my son I can't stand it. He has worked hard.

Sunday, October 19, 2008

"How to Whip the Autism out of Your Bratty Kid"

I make it a point not to respond directly to famous people in the media who try to talk about autism and seem to constantly fail miserably.. whether it be a politician or some celebrity. It really doesn't affect me much more than it does when one of my friends brushes off my concerns about Jake and says "Oh, he'll feel better once they get him on the right medication." or "Yeah, I'm sure its hard hearing that your child has 'mild' autism." It does upset me that those people have a platform and that their voices are louder than mine.

Before Jake was born I was really one of the nay-sayers of autism. I felt like kids around me were dropping like flies into that pigeonhole and being diagnosed. I was one of those people who would look at a 5 year old who's parents had told me he was autistic and say "I don't see anything wrong with him." I'm just as guilty as the people who I constantly bitch about. I was insensitive, but I THINK that I kept it inside of my head a little more. At least I hope so.

I'll give a direct example. A mother that belonged to one of my various groups told me that her then pre-teenager was autistic whom I had never met. She also had a 5 year old that attended many of our various group meetings and who wore a location device because he was prone to wandering. Having personal history with the mom, I had reason to believe that she was kinda nuts anyway, and watched her from a distance and also observed her youngest and felt like he didn't act much differently from any other children that age. You have to realize that I was also dealing with Jake's lack of motor skills at the same time, so seeing any child walking around and talking made me feel like they must be OK. In hindsight, I remember a party I had where this particular mom and her family were invited to my house to do some mural painting with the kids. She brought the "supposedly autistic" teenager and her then 6 year old little boy. The teen seemed "just fine" to me, although he was obnoxious and hyperactive like any other early teen. Again, in hindsight, there were a lot of things going on with that boy, but I chose to ignore that and opt for the easier answer and assume that she was just still a nut, and probably a bad parent, based on my knowledge of her past behavior (gotta love small towns).

But one thing that my mind brings to the surface and makes me repent all of those thoughts every time I see Jake smack himself in the face when faced with a decision is this. Her "normal acting though maybe a little nerdy" six year old came to me and asked for more paint. I was currently mixing and held up two bottles and said "yellow or blue?" Her 6 year old stared at me as if I'd asked him to stab himself in the eye, briefly smacked both of his hands across his cheeks, grabbed one of the bottles, and ran away. "Ok.. that was a little odd." I thought.

Now I see this exact same behavior in Jake every single day. When presented with a "would you like THIS or THIS?" question.. he becomes distraught, and will usually slap his own face or cover his eyes or ears. So there, I said it, I was one of those judgemental people. I didn't know, so I try not to blame others so much for their ignorance.

Another way that people tend to try to make me feel better, aside from telling me that Jake is fine, that "the doctors just like to diagnose everything these days" is to offer me a miracle cure. Again, from what I can tell (as my anger at the world dies down.. don't worry, it will soon rear its ugly head again, I am sure), most people are really really trying to do me a favor and trying to help. I can just give Jake a special diet or read some celebrity's book and he'll be cured. "My friend/someone I read about/my sister in law gave their child chelation therapy/stem cells/a special diet and now their kid has almost no signs of autism."

Despite my fear of vaccinations and additives in food and other possible environmental hazards that could be making our children sick, I am beginning to accept the fact that Jake has been different from other babies since very very early in his life, possibly since birth or very close to it. I am also beginning to accept that fact that there is no cure for being Jake. He will be the awesome person that he is, not neccesarily despite what I do.. because I need to work hard to help him NOW, but that he is who he is, regardless, and he will always be affected by his ASD. I think that he will always have hurdles to jump and mountains to climb, and that if I spend too much time looking for a "cure" then I will be wasting time. I just want to help him right now. My job is to find the right path and to take it.

P.S. The irreverent title is in reference to some of the latest media crap. I will honestly say that if a few spankings would have "cured" Jake of his autism.. then we would probably just suck it up and spank him. Thats all I have to say about that.

Thursday, October 16, 2008

Occupational Therapy Day 8

On Thursdays Jake is picked up by the bus at 7:15 (This morning he didn't wake us up until 6:57 and the bus came at 7:07... nothing like a Chinese fire drill to set the mood for the day). He is dropped off by the bus at 11:00 and we have 30 minutes to get him fed lunch and to be in the car to leave for OT.

Today's session went really well. Cindy was able to engage Jake in play for quite some time. He is leaving her less often and coming back to engage her after a few seconds break. Its really neat to see how they are growing together. At the end of the session I expressed my concerns to Cindy about having all of these tests run. I told her that I honestly didn't really like Dr. Causo or his recommendations. I feel like the tests are unneccesary and on top of that that they are a financial strain. We have only managed to get one of the tests done at all, and it would probably take a year to get them all finished. I really don't want to go back to him, and I feel just like Dr. Michaels seemed to when he said "Gosh, I was really hoping just to get a diagnosis." She suggested (and Dr. Michaels had also mentioned) that I contact Floortime Atlanta and have Jake see Dr. Deborah Dunbar who is a developmental psychologist who specializes with children with ASD. She is also one of the people who Cindy is working closely with to be certified. I talked to Steve about it and I think we are going to switch more to that path. I am not opposed to having the tests run on Jake, but I feel like I've been put into a position where, since the tests have been suggested we need to do them "just in case" and that not doing them is careless. However everything inside of me says that they are just unneccessary. Cindy assured me that, should Jake need any tests run in the future, or if we change our mind, that Dr. Michaels can order those tests. The financial part of it doesn't so much play a role, as we will find a way to afford anything Jake needs, however I would just like to find a path and stick to it... instead of floundering around doing some of this and some of that. I will contact Dr. Dunbar ASAP.

Aside from discussing that, Cindy again assured me that Jake will be high-functioning, but that the time to work with him to give him the tools to be so is right now. I again expressed my frustration with the term "high functioning." "What does that mean?! that he'll be able to dress himself, use the potty and tie his shoes, or that he will be able to be independent and happy and have relationships?" Her answer was "I think he has the potential to not only function highly in society, but to be extraordinary." Thats nice to hear, and I try to believe it.

In other news....
Jake still absolutely adores school. He is talking a lot mnore, and even though a lot of it is still echolalia, he is learning to occasionally answer a question correctly. He still tries "YES!" no matter what the question is, but he learning appropriate responses like asking "are you OK?" when someone else is hurt, or "I'm sorry, baby brother" when prompted, and he seems to at least act genuinely sorry and use correct inflection, instead of just yelling out the words. Jake came home today and wanted to play marching band (banging two pot lids together while Dad tried to talk on the phone). I "helped" the noise level by getting a harmonica, handing Manny a toy tambourine to shake while he rode on my back, and we had a full fledged marching band. I've been trying to get Jake to play this game since he could walk, but somehow they got him to do it at school. I was thrilled.

Today his notebook from school came back with this note:
"Great day! The Chick-fil-a cow came today. Jake didn't like the cow too much. He calmly told us "No, cow." "Bye Bye cow." He went back to the room and played on the computer and was happier. (I don't blame him, it was a BIG cow.)"

I am feeling a bit better this week and not so down. A whole week of being sick, complete with 2 days of fever so bad that Steve had to take off work because I couldn't lift the baby really took its toll on me. I really need all of my wits and health about me in order to function like I need to. I am glad to be well again. Here's to a sickness-free school year.

Sunday, October 12, 2008

Another Update

I've thought a few times about deleting my previous post, but just decided to leave it. It seems like my family and I are feeling a bit overwhelmed right now and traveling through a rough spot. Steve is having a hard time dealing, and I feel like I need to keep everyone happy at once, and that I'm failing miserably.

Jake is actually doing really well. He's doing good in school and seems to be really enjoying it. I have yet to see any signs that he's having the least bit of trouble adjusting. The notes from his teachers in his notebook are always positive. His second horse riding lesson went even better than the first. He enjoyed sitting on the horse and being led around a field.

Jake has lately been showing even more sterotyped behavior than he used to. Questions that i was able to answer "no" to on the various autism questionaires are now becoming "yes's." Jake didn't used to repeat questions, but lately he does it a lot. He also recently learned to say "Yes!" and everybody got so excited that now he thinks that this is the answer to every question. I was playing with some easy puzzles with him, putting them together and then asking him questions about the pictures. Our conversation went as follows:

Me: "Jake, what color is the parrot?"
Jake "Jake, what color is the parrot?"
Me: "Jake, what color is it?"
Jake: "Jake, what color is it? YES!"

Also, in the past Jake has lined up objects or stacked blocks, but hasn't really gotten frustrated if they are disturbed. Recently he gets really agitated when things won't line or stack like he wants. He constantly lines things up... searching for MORE cars to line up, or trying to line up everything in the entire room. If blocks fall he gets very upset, and an even more frustrating trick that he plays on himself is trying to stand books up on their ends. Some thick books will stand up, but he even tries to stand the thin ones on end. He gets very very upset when they won't stand up.

The verbal stimming is about to drive us to distraction. Jake has a few.. the "whooohoohoo" sound, the hissing and clicking, and he can imitate the blinker clicks on the car with amazing precision. The last one is about to make his father and I lose our minds. He does it all day, and LOUD! Its amazing the amount of carry he can get with that 'bump click' sound. We've just started telling him to cut it out. Its unbearable. I think sometimes that these things in themselves might not be as annoying, if it weren't for the fact that its a constant reminder that something is very wrong in that little noggin of his.

The one thing that the therapists, the literature, and pretty much everything else I come across about autism therapy, is that Jake needs to be engaged for most of the day in order for him to develop and grow. I am constantly reminded of this fact. When we are at home it takes only minutes for Jake to slip into stimming behavior if left alone. In the past I feel like I've taken advantage of this fact in order to get things done that I needed to do. Now I feel guilty if I spend more than a second doing anything but engaging him. When he stims he is loud: clicking, hissing and popping his tongue, and if I ever slip off into another room I can hear him. All I have to do is say "Jake, lets play a game" or "Jake lets go outside" or "Lets go for a car ride." to bring him out of it, but it can just be so exhausting. But if I don't engage him, I feel like I'm just letting his brain rot and letting him slip further away. I feel like I've wasted so much time already, and that I've done him a great disservice by taking advantage of the fact that he "always liked playing by himself." I will never get rid of the feeling that so much should have been done so much sooner. I feel like I have to make up for lost time by doing as much as I can now. Part of the reason that we are always going out is that I have an easier time working with Jake when we are at the park or the aquarium or just about anywhere. It comes natural then. At home its forced and he is so difficult to engage. It usually ends in frustation on both of our parts. I am grateful for the couple of hours that he goes to school. At least I can hope that he's learning there.

Meanwhile, Steve is voicing frustation that we have absolutely no family support. I correct him and say that my father is always available to talk about it and give support. Otherwise, we're pretty much screwed in this department. Steve's mother and father raised Steve's brother, who was born profoundly deaf and who Steve is beginning to believe has some social delays as well (Steve remembers VERY vividly that his brother exhibited echolalia). He feels like they SHOULD be a source of support, but they are quite happy to just not talk about it. The rest of my family is the same, prefering to avoid the subject or just to avoid us altogether. He says he feels alone. I know how that feels, especially since it took me two years to convince anyone, including my husband, that Jake has issues.

Sometimes I think we just need a break with each other. Steve and I have been out to dinner without the kids once since Manny was born... we left for a grand total of two hours.

I guess I'm using my blog as a bit of a whine-fest and vent vehicle lately, but sometimes it helps me to go back and read.

Wednesday, October 8, 2008

Update

Its been a week since I updated. Part of the time I was distracted by fun, and the rest of the time I've been distracted by illness. Friday I had planned to have Jake's blood tests done, however I was given the run-around. After securing Mamaw as a babysitter for Manny I was still unable to get Jake's blood tests done due to some sort of confusion that I don't understand. I'm getting used to wasting time waiting for doctors to communicate with each other though.

Friday night we set off to the Three Sisters bluegrass festival and had such a wonderful time that we had to repeat the performance on Saturday.

Oh well.. i'm trying to write about all the cool stuff we did this weekend, the great therapy appointment, and Jake's apparant great time getting his blood draw (finally) and cracking up all the nurses by saying and signing "Jake is crying.. Jake is SAD." I wasn't there, I was sick in bed with some sort of incapacitating bullshit flu. I am trying to keep my blog positive like I said I would, while in reality we have dealt with two days of tantrums brought on by nothing more than Jake's inablility to communicate or.. as his mother, I am more apt to say, my inability to understand my son. Sometimes I find myself terrified of my son. Walking on eggshells so that I don't set him in the wrong direction. I know that all parents deal with this at different ages, but here it became a lifestyle when Jake was but a few months old.

I feel like I live in some sort of paradox. Where people who don't really know Jake, like my family and peers say "oh, once he gets the therapy/medication/whatever that he needs he will be fine" and the people who really know Jake.. like me, Steve, and his therapists and teachers say "once he gets what he needs he's sure to be 'high functioning'".

Its hard to sort that all out. The people in denial say he'll "be fine" while the people who see kids like him every day call it "high functioning". Does that mean he's going to "be fine"... or that he's going to function at a high level for a "retarded kid." Please don't think that I'm being insensitive (the 3 readers that actually view this blog), because I type this out while crying my eyes out late at night.. because I can't sleep anymore). I'm tired of pussyfooting around the reality.

Meanwhile, I'm just trying to hold myself, my kids, and my family together. No small feat when there are great crisis going on in the great big bad world outside. I wonder if we'll all have a job in a few years, and I can beans while I wonder. I wonder when we'll find a reliable babysitter or nanny who can take over some of the time that I NEED to spend with Jake while I make money for the family, or one who can at least be interested in becoming knowledgeable about Jakes issues and can help us for a few hours on weeknights when we really need it. And if I find that person, can I afford them!

Luckily, the stress of the holidays has not gotten to me yet, well, not too much anyway. This year we will be out of town for the majority of the celebrations, and for that I am truly thankful. The most heartwrenching part will lie in bowing out of celebrations and the great-big gift exchanges that are so important to my family. We just have so much more to think about this year.

Its been a long week.. please excuse the tirade. I'm having a moment.

Thursday, October 2, 2008

Occupational therapy day 7

Today we met Cindy at Brookwood Park. Jake was very happy to see Cindy. He took both of our hands and led us to the playground. She has a way of interacting with him and engaging him that I am learning to model. She seems to say that she is still feeling him out, but she is getting good at it. She said before that she wants to be a special person in his life so that when she needs to challenge him and do some "risky stuff" with him, that he will trust her. I think that she is well on her way. Jake doesn't give many people names. As far as I know he only names: Mommy, Daddy, Brother(Manny, or baby), Mamaw, Papaw, Grandy, Courtney (the babysitter), and Bridgett. Today he said "Hi, Cindy" and at the end of the session "Bye Bye Cindy." She's managed to become special to him in less than a dozen meetings. I won't mention the fact that he didn't say "mommy" until he was over two years old.

Cindy is very supportive and is becoming a special person to me too. She doesn't just work with Jake (although that is her main objective, and she sometimes says "I'll talk to you later, let me do this with Jake" in not so many words) she also asks me about my husband and family and how they have dealt with Jake's issues. I am honest with her, and she makes me feel good about my parenting choices. When Steve and I were talking about dropping speech therapy in favor of letting him get speech therapy at school, I made it extra clear that I wouldn't drop OT with Cindy. "I'll groom extra dogs or sew extra packs, but we will keep Cindy. She is my ally." I can't fathom that someone can manage to be so "non-self-absorbed" (I couldn't find a good antonym) and take such an interest in the children that she serves. Of course, some might just call it "being professional" but I think that its more than that.

Tomorrow we go to the diagnostics center for a blood draw. I have put it off all week. Thankfully Mamaw will be coming over to watch Manny, so I don't have one baby screaming while another is held down for a blood test. Maybe Jake will surprise me and not freak out. We shall see. Looking forward to the end of this week!

Wednesday, October 1, 2008

Riding Lessons

I suppose that my ultimate goal these days is to completely exhaust both of my sons. This morning Jake asked if we could go "ride car city" so hey, my internet connection was dead, so why not. We headed to the aquarium, then to a really neat toy store where both boys got new toys. Jake got a fort building kit and Manny got a ride-along toy. Then we went to the organic grocery for lunch and home.

Only a couple of hours after getting home it was time for Jake's horse riding lessons. He did really well, although he only wants to stay on the horse when it is moving (who wouldn't, the alternative is hitting the ground, I guess). He was a bit whiney, but she said he did a lot better than a lot of kids his age who sometimes cry their entire first lesson. We will try different approaches, and more variety than just walking in circles. His favorite part was giving Red cookies. Oh, and the helmet, he couldn't get enough of the helmet. I'm hoping its something he enjoys for a long time...the riding lessons, not the helmet.

When we were done he politely handed his helmet back to Crystal and said "Thank you" in words and sign.

He's asleep in his room now, worn out from a long day.

Occupational THerapy Day 6

Cindy took a "Watch Wait Wonder" approach to learning about Jake on Tuesday. She let him lead a lot and then trying to figure out why he does what he does. For instance, turn-taking games are too overwhelming for Jake, even simple ones. For instance, he was kick kick kicking his feet in the air for fun, so Cindy laid beside him and kick kick kicked her legs too. He would go, then she would go. He liked the game, but it was just too much for him. After 3 or 4 turns he had to escape and run do something else. This pattern continued with other things.

I am learning a lot about Jake and always interested in what insight Cindy will have next. Thursday we are going to meet at the park and she wants to see how I interact with Jake on a daily basis. It should be fun.

Monday, September 29, 2008

Off to School!

(alternate title: "The longest 3.5 hours of my life"

So today was the day. At 7:30 the bus arrived to pick up Jake. It was a similar experience to the first time he rode the bus last week. Except this time he didn't go around the block and come back. This time the bus kept going. I was shaking in my shoes when they drove away.


I'm not an overprotective mother. I am an attached mother, however and after the last experience, anyone would be nervouse. You see, last year I attempted to put Jake in a preschool program at a local church. Many days he would cry so hard that he would shut down, literally going to sleep (or unconcious) and would be laying on the floor when I had to go pick him up. He usually couldn't be roused and would sleep on the way home as well. He cried hysterically any time you mentioned school.

So I spent the longest 3.5 hours of my life waiting for the bus, and was nearly glued to the window at 11 AM. The bus doors opened and a smiling Jake appeared. He's very tired, and is resting in his room, but I am confident that today was a success. Here's what his teachers wrote in his book.

9/29/08
Jake was SO excited when he got off the bus today.

(then from the speech therapist)
Jake did so well today. He used a lot of words to express himself. He told me he needed help drawing and labeled his drawings. Very good first day. Amber.

(then from his teacher again)
Jake has done really well. He loved painting. He ate some crackers and drank some orange juice at snack. You can also send a snack if you want. Jake got very excited when we went to the playground. He did seem pretty tired after a busy morning and was happy to see and ride the bus again. Kathy.



Oh wow, I am SO relieved. The absolute KEY to making sure that school would work out was a good first day. You just can't believe how super proud I am of my amazing smart little guy.

Over his spaghetti lunch I asked Jake "Did you have fun at school?" He said "Go school, ride bus." and smiled

Watch how excited he was to get on the bus.

Saturday, September 27, 2008

Jake can read.

We were quite aware of the fact that Jake can read, or at least learn and memorize words. We had been writing three letter words on his doodle pad or paper and having him read them for a couple of months now. I guess I didn't realize how big his reading vocabulary is. Most of it I'm sure he is learning from the Signing time videos because they always put the written word on the screen when teaching the sign. I realized that he could read one day when I was watching the signing review at the end of the DVD (because he was getting ahead of me on sign language) and he read the word "help" when it flashed up on a blank screen. I thought "oh, he's memorized this." when I realized that he'd never seen the signing review before. He had read the word.

What is probably most surprising is that the reading, like most of Jake's "splinter skills" as they called them on his special education report, is that they are self-taught. His drawing, number and letter recognition, counting and other skills he has learned from TV or educational electronic toys, and yes, sometimes us. His drawing however seems to be almost completely his.

Rarely are his therapists and evaluators interested in these extraordinary skills. They are more concerned with helping him with what he can not do. This is understandable. I think I may work with him more on reading words and get a head-start on that particular skill. Why not, right? Its possible that Cindy may disagree, and I will surely ask her, but hey, if he can already read well when he is five, we can always use the extra time not spent learning to read focusing on social skills.. maybe?

Tonight I made some flash-cards and showed them to him. I wrote some words that I was sure he was familiar with from baby signing time. He surprised me on a couple of them I didn't know he knew "please" and "sorry". The video is of the second time he had seen these particular flash-cards, and he was pretty distracted. He was more interested in holding and turning the cards himself, like he is doing at the end of the video.

Speech Therapy Day 8

Just as Cindy saw on Thursday, Elizabeth got to see a calm and centered Jake today. "A completely different child." She said. We just never know what state Jake is going to be in and these phases last for weeks or months sometimes. And truly he is like a different child. After 7 sessions of completely wildness Jake sat with Elizabeth and played with the shape sorter and a puzzle. She got to hear him speak more than she'd ever heard.

I was sad to tell her that Jake will be going to school and that we'll possibly be dropping the speech therapy at TIPS in favor of the speech therapy through the school system. It will save us about four tanks of gas worth of out-of-pocket expense each month. I assured Elizabeth that it has nothing to do with her, its more of a convenience and financial based decision. Of course all of that is contingent on Jake liking school. Even if he doesn't like it, I can continue to do speech therapy with Amber.

Jake is using phrases like "What's the baby doing?" and "I want..." more and more often. I can get him to say "Please" and "Thank you." much better as well. Not that it has to do with speech, but we have been working very very hard with him to keep him from touching strangers and their watches, and he is at a point where he will walk up to people and say "Hi!" and then lean over and inspect their watch without touching. Not quite what I would call 100% socially acceptable, but its a great first step. Besides, its cute as hell. Maybe I'll teach him to say "Heeeeey, nice watch!"

Friday, September 26, 2008

Pediatrician Visit

Thankfully, Steve was able to keep Manny while I took Jake to Dr. Michaels' office. It was probably a good thing too, since Manny napped the whole time I was gone (so Steve got a little work done) and we waited over an hour to get in to see the doctor. Dr. M. was extremely apologetic about our wait time, and Jake was extremely patient considering.

Dr. M couldn't find the report that Dr. Causo had sent, so while we waited on a copy to be faxed over, I told Dr. Michaels everything that Dr. Causo had said. I also had a copy of the prescription for all of the tests that Dr. C. had ordered. Dr. M. seemed to have a similar reaction that I had had last month after I left Dr. C's office. He said that he was really hoping for a simple diagnosis, and he really didn't think that Jake needed all of the tests that Dr. C listed. Well, he said that, in many more words.... I don't want to put words in his mouth, but this is what I gathered.

After we discussed a game-plan, Dr. M suggested that we get the metabolic, chromasomal and genetic testing done first. This will involve me taking Jake to a local diagnostic center for a blood pull. Then they'll send the samples off for testing and well wait a month (everything takes a month or 6 weeks these days).

I am confused as to whether or not I should follow up with Dr. Causo. Since we aren't doing ALL of the tests, do I go back to him? What are we trying to get again? A diagnosis, or "label"? Jake is getting services through the school and through Cindy, and insurance is paying all that they are going to pay either way. I DO want to get the genetic testing done to see what it tells us, but as far as getting a "diagnosis" based on what someone sees, I don't know how important that is. Dr. Michaels says that if we decide to move further, we can go to a Developmental Psychologist in Atlanta if we feel the need.

One day next week I will take Jake to Dalton Diagnostics and have blood drawn (cringe). I am glad that these tests will only require a blood draw. It will still probably be somewhat traumatic for Jake, but it will be over in just a few minutes. At least we're moving forward.

Thursday, September 25, 2008

Occupational Therapy Day 5

Today was yet another interesting day at OT. Cindy couldn't believe how quiet and attentive Jake was. She wanted to know how long we spent at the park today before OT (about 45 minutes) and was in awe at how calm Jake was. I tried to express to her that this is just how he is. He is at maximum speed plus 100 MPH for a month, then settles down into the state that he was in today for a few weeks. Thats just life with Jake. You NEVER know what you are going to get.

I talked to Cindy quite a bit today. I told her about school. I told her about the bus. I gave her the report from the special ed department. I told her about the riding lessons. She seems to think that they were all wonderful ideas. I also told her that if school works out that we might drop the speech therapy with Elizabeth. For one thing.. it will save us a pantsload of money every month, and if he is getting therapy at the school, why should we screw up our saturdays when we could be doing other family activities? Cindy was in agreement that we should come up with the program that fit our lifestyle.

I enjoyed my talk with Cindy today. She has a lot of insight on every aspect of Jake's treatment that I bring up. I feel like she's a great friend and a great resource for our family, and I look forward to talking with her every week. If I could pick ONE person as an ally for our family in this journey, I think it would be her.

I am worried about my trip to Dr. Michaels office tomorrow. I will have Manny and Jake with me, as I really have no option for care at such a short notice (my husband being the only person who can or is willing to care for Manny, he just has had no opportunity to develop a relationship with any other caregivers...). Dr. Michaels office has recently lost staff, so the wait time in his office and lobby has sometimes been over an hour and a half for us. I am going at 11:30 which is naptime for Manny and lunchtime-quiet time for Jake. I just hope that I don't end up trying to talk out this very important consultation with Dr. Michaels over two restless boys. Wish me luck!

Wednesday, September 24, 2008

A Bus Ride, Riding lessons, and a bit of Frustration for Mommy

Today at 1:30 a strange sight could be seen on our driveway camera. Jake and I have often watched the cars and the schoolbusses go by on our camera (installed because we have no windows on that side of the house), but this time there was a bus. A STOPPED bus. A stopped SCHOOL BUS! I told Jake to look and he ran to the TV breathlessly saying "Schoolbus! Schoolbus!" I already had him dressed and in shoes and had Manny on my back in the carrier, so I said "Lets go see it!" I thought he might trip over himself getting to the door. We jogged down the driveway and Jake was simply delighted to see the bus door open and nice ladies inside waving at him. They were equally delighted to see Jake so excited that he had to stop every few feet to flap and squeal and jump up and down. He climbed right on the bus and hopped into a seat and clapped his hands and exclaimed "Yaaaaaaay!"

After I spoke to the bus driver and her aide while Jake tried out different seats, I asked if they would take him for a ride. They were happy to, and I decided to stay and let him go by himself. I didn't want him to get the idea that Mommy rode the bus with him. They drove around the block and he returned just as happy as he had been when he left. We discussed his schedule (they will pick him up at 7:30AM on Monday morning and drop him off around 11:00 AM) and I led a reluctant Jake off of the bus. He waved to the bus and drivers all the way up the driveway, as it turned the corner, and until it was completely out of sight. I think that the bus is a definite go. I wish I had pictures, but I do not. Maybe there'll be more of his first day of school.

After reading Temple Grandin's book and seeing her speak of how wonderfully children with autism do when exposed to horses, I decided that Jake would probably benifit from being around them. I love horses and I love to ride, and after watching Jake sit so calmly during a pony ride, I started looking around. I contacted Storybook Farm and Equine Rescue which is just a couple of minutes from our home. Crystal, the owner of the farm, agreed to meet with us this afternoon. Jake loved the farm where there are pigs, ponies, chickens, cats, donkeys and of course, lots of horses. Crystal and I worked out a trade. I will groom her three farm dogs monthly, and she will give Jake a half-hour riding lesson every Friday at 3 PM. He will be riding Redwho we met today. Red is a beautiful horse.

Jake is aquiring quite the weekly schedule. School on Monday and Thursday, OT on Thursdays after school, Riding lessons on Friday and Speech on Saturday. Not to mention the activities that I'll manage to come up with on off days. It may seem like a lot for a 3 year old, but it sure beats watching him lay in the floor and stim. It also takes some of the pressure off of me to figure out activities every single day with only me. I think it will help a lot.

And as for the frustration....

Today Dr. Causo's office(the developmental pediatrician) called to remind me of an apointment that Jake has tomorrow. I had no idea. I was quite confused. I told the receptionist that we hadn't had any of the testing done and that Dr. Michaels had told me it would be at least 4 weeks before he got the report from Dr. Causo and that I should call him by the end of the month. "You haven't done anything?" she asked. Ugh. She checked and told me that the report had been mailed to Dr. Michaels on September 6th. Double Ugh! I cancelled tomorrow's appointment and rescheduled for their next closest appointment which is October 22nd. I called Dr. Michael's office and made an appointment for this Friday at 11:30 for a consultation. I am a bit frustrated that things have been delayed for yet another month. I have a lot of questions. One of which is about Jake's toenails, which have always been flat and thin, have begun to look worse and even concave. I worry that this is a sign of something related to nutrition or metabolism... or somethine else weird. Anyway, I can ask him on Friday. I am ready to get some of these things off of my mind so that we can move forward.

So it was a great day if you are a three year old.. school buses, horses. And a long and tiresome day for Mommy. At least we're getting somewhere!

Tuesday, September 23, 2008

Special Education Department Results Meeting

The meeting went pretty well. Steve and both boys went with us. I have on my desk a giant report that is mostly a summary of things I have told them or that they tested themselves. I will hit the high points.

(a number with a % means the 'th percentile and a number that says, for example 1-8 means that jake is functioning on the level of a child who is 1 year and 8 months)

Cognition:
"Jake's performance on the BDI-2 yielded a Cognitive standard score...which falls at the 2nd percentile when compared to same age peers."

Attention and memory: 1% 1-8
Reasoning and Academic skills: 9% 2-0
Perception and concepts: 1% 2-2

Communication:
"...first percentile... The results from the [tests] indicate that Jake has significant language delays."

Receptive: <1% 1-11
Expressive: 1% 2-1

Motor Skills:
"...42nd Percentile" Jake's gross and fine motor skills were OK, and his perceptual motor skills are exceptional, rating in the 5 year old range and >99 percentile.

Adaptive Behavior:
"The results indicate that Jake's adaptive behavior or daily living skills are adequate at this time."

Social/Emotional:
"Parent ratings on the [test] yielded a social-emotional score.... equivalent of 2 years 1 month. The ratings on the [test] yielded a socialization domain standard... which falls in the 13th percentile. These results indicate that Jake's social development is somewhat below average."

Autism:
Jake was seen to have some autistic traits, and the test showed a "most likely autistic" rating, however the school system doesn't officially diagnose, so I guess its just another indicator.

From the summary:
"Results of the present evaluation suggest that Jake is currently functioning below expectancy in the areas of social skills and communication. Cognitive scores are inconsistent... Jake appears to have splinter skills and some gaps in cognitive development at this time. Adaptive skills appear to be within age appropriate limits. Overall, motor skills appear age appropriate, while perceptual motor skills appear to be exceptional.... At this time Jake demonstrates significant delays in the area of communication and social skills. It appears that jake will need additional instruction prior to kindergarten in order to learn effective ways to communicate with others, learn various age appropriate concepts, develop more appropriate social skills, and increase interaction with peers."


So, there it is. I don't really feel any different after this evaluation. It all seems to be things we already knew, just written down in a harder-to-understand and more official sounding format. The good news is that Jake does qualify for services through the school system special education department.

What does that mean? Well, for one thing, Jake will begin school on Monday! Kathy H, the preschool teacher, one of the people we met with, and also a childhood friend of mine, has room in her class. He will be attending on Mondays and Thursdays from 8AM until 10:30. I am hopeful about this because when we pulled up to the pioneer headstart building, Jake began flapping wildly, giggling and saying "School! School!" I guess I called it "school" when we went there for the assessment. He loves the rooms and played on the playground with Daddy and Manny while I finished up in the meeting and was reluctant to leave.

I realize that Jake will be in a class with other delayed and disabled children, and while I feel like he could benefit from being in an integrated program I realize that A) there is no such option available right now and B) I would rather him be in a class with all delayed children with a teacher who is trained to deal with kids like him than for him to be in an all-typical preschool program with a teacher with no experience with special needs children. Ms. Kathy also says that they have tons of flexibility when it comes to catering to each individual child's needs, and says that they will expose Jake to the typically developing children in the headstart class that is in the same building, both on the playground and in group activities. Jake will be given speech therapy there at the school by Amber (my cousin, who could not join us today) and any other services that he needs. I think this is a great stepping off point. I am still terrified that he will not like it and will break down like he did during his short stint in preschool before.

Even more exciting? Jake will be riding the bus! There are two bus drivers and one small bus (yes, the proverbial "short bus".. I couldn't help myself). Kathy said that the children who ride the bus usually LOVE it, and considering Jake's obsession with schoolbusses, I am hopeful. They will even come by one day this week to let Jake try out the bus and maybe go for a short ride around the block. I am nervous and excited for him.

Now I must stop stress-eating like I have been all day, and try not to think too much about the first day of school.

Monday, September 22, 2008

Drawing Again


As it sometimes goes with Jake, all I have to do is voice a concern and he proves me wrong. This morning Jake started drawing again, just as well or better than he ever has. He drew "Joe and Blue" from Blues Clues, as well as a Ladybug. His detail on people (when he draws them) never ceases to amaze me. The green markings on Joe's legs are "socks."

On the other hand, he also sprayed my entire grooming shop with coat finishing spray, dumped out a whole box of powder and rolled himself and his little brother in it, tried to eat berries from ornamental grass, and made "dog food soup" for the dog using her water bowl and some dog food. With every leap comes mischief, although I can handle mischief as long as he's moving forward in other areas. His speech is great today, and he's been talking quite a bit.

Tomorrow we all go meet with the Special Education department to get the results of their assessment. I have already been warned that sometimes this is a hard meeting to go to because they compare your child to "standardized" guidelines. I have no doubt that Jake won't meet many of the requirements, so hopefully I have prepared myself mentally for it.

Speech Therapy Day 7

Speech Therapy didn't go so well on Saturday. Steve unexpectedly met me at TIPS to take Manny off of my hands. That was a relief and made it easier for me, but Jake was upset that he wasn't staying. He cried for a lot of the time. Sometimes I think that nothing is happening with speech therapy with Elizabeth. Not that I think that it is her fault, and maybe she is still just trying to figure him out much like Cindy is doing. He just simply doesn't do any of the activities that she sets up for him. I am quite frustrated with it. But of course we'll keep going with it and see what happens.

Thursday, September 18, 2008

Occupational Therapy Day 4

Cindy is still trying to get a feel for Jake, however, after reading the sensory profile that I filled out, she had a much different approach to working with him. She decided to let him lead. Meanwhile, I was videotaping the first few minutes of their interactions so that she can get started on that. She was much more successful getting him to interact with her by letting him decide what activity he was finally going to settle down and do. It was probably also helpful that I took him shopping and wore him completely out before we got there.

I asked her about his drawing, and she said that we should probably watch the issue as a "lost skill," although she took into account what I told her, which was that he often lost interest or seemed to lose the ability to draw any time he was gaining other skills.

Jake had a wonderful surprise during the last 15 minutes of his visit. Bridgett, one of his very favorite people in the world, showed up for her own OT appointment early (totally planned by Heather, Cindy, and I). Cindy was interested in seeing how Jake interacted with other children, and Heather was understanding enough to allow her daughter (a couple of months older, but much smaller than Jake and disabled from cerebral palsy..but don't tell HER that) to withstand the onslaught of a very excited Jake. I guess the "quote of the day" came from Cindy. Its something that I have said a million times when trying to explain Jake's social issues to others, but coming from someone with so much knowledge, and who seems to always have a clinical way of speaking, it just tugged at my heart. She said: "What is so sad about this is, he wants so badly to play with her, to interact with her. Its so obvious that he likes her so much." I don't show emotions when people are watching if I can help it, but I can't think about her saying that sitting here alone without tears coming to my eyes. I wanted to scream "YES! exactly! thats what I keep trying to tell everyone." I know that this is why we don't get invited to so many playgroups. The more Jake likes someone.. the more he hurts them physically. Never in anger or as an act of cruelty, but just because he seems to have no idea what to do with his body when his mind decides "hey! you're cool!"

It seems like we have a long way to go with him when it comes to this particular behavior. More so than speech, cognition and everything else combined. It is the biggest issue that I have when it comes to dealing with my family as well, because no matter how much I beg them, I can't get them to understand that Jake is too big to touch others inappropriately. He is allowed to jump on them, grab them, pinch them, twist their arms around to see their watches. Mamaw encourages him to grab at her throat and pinch while she makes a "frog" sound. A habit that caused him to painfully choke a young girl at a playgroup once while he happily yelled "frog! frog!" Even strangers, when he grabs their arm to look at their watch or when he pulls their clothing will say "Oh, he's OK!"

I am very very lucky to have understanding friends like Heather, Clyf, Bridgett and Cindy. Sometimes I don't know what I'd do without them.

Artist's Block, or Evening-out?


Yesterday we went to the playground with a group of Attached Parents Group moms. I hadn't seen many of them for several months, and some of them looked right and Jake and didn't recognize him. I guess part of it might be the super punky hairdo, but I think its just because he's grown up so much in just a little while. I was so very very proud of him. He was nice to other children. He took turns on the slide. He refrained from touching people and their watches so much (something we've really been working on). And he even climbed to the top of the structure and yelled "Hi You!" to me, almost as if to say "Hey mom! Look at me!" I didn't have to follow him around like a shadow to make sure he didn't grab or pinch anyone. His self-control is just amazing compared to where it was just a few months ago.

On the other hand, he seems to have lost his ability to draw. Now, there have been times here and there where he seems to have lost interest in drawing and then come back to it, but somehow this is different. When I ask him to draw something in particular, he will try to draw it, get frustrated, then insist that I draw it for him. This morning I asked for a house, and he drew a smushed mushroom looking house, then scribbled at it and insisted that I draw one for him. He seemed quite upset. My question about this is: Is this considered a "lost skill," the fear of every parent of an autistic child, signaling some sort of regresion, or is it an "evening out of skills?" Is he using the part of his brain that used to draw really well to work on other things, like speech and social skills? Or is it just a momentary lapse like I've seen before, and he will go back to it? I will have to ask Cindy at OT today what she thinks.




Meanwhile, Jake spends his time being nice to his brother, while I spend too much time on the phone talking to the school psychologist, the OT, the office managers about insurance, etc. It seems that Jake is quite the interesting case and it is taking them quite some time to figure out what to do with him when it comes to therapies. Thats OK though, we have time, and although it is frustrating, I remain hopeful.

Sunday, September 14, 2008

Thank you again, Professor Grandin.

I have been reading again. I dont' think I've been able to have time to finish a book since Jake was born, but lately I have motivation. I keep reading anything and everything I can find by Temple Grandin. I heard about her and listened to her interviews on NPR long before I we figured out that Jake was autistic, simply because I felt like she and I had a bit in common, both because I have had to work at being social and enduring idle chit-chat and sports talk, and because of the way that I work with animals by trying to learn their language, instead of trying to make them adapt to mine. I've always, in my 15 plus years working with animals, been irritated when my clients anthropromorphize dogs. It still irritates me, though I tolerate it because I know that it is socially acceptable.

Sometimes I think that that the fact that I've worked with animals my whole life may be helping me journey along as mother to Jake. I know that he doesn't think and feel like other people do, and, according to Prof. Grandin, he may think a lot more like an animal than most people. This is something that I've figured out to some extent on my own, although I was afraid to admit it. I was afraid to admit that using animal conditioning techniques when trying to teach Jake worked better sometimes than trying to teach him like a child with more advanced "human" social abilities. So.. I guess I have been very afraid to admit that sometimes I feel like I'm "training" Jake istead of "teaching" him. I get the feeling that his OT, Miss Cindy, may think that my attempt to be a crackpot behavioralist may have been to Jake's advantage. Yet, I'm on a quest to learn much much more.

Tonight when reading this interview on NPRs website, I had a realization. Well, actually it was more of a validation of something that I had already figured out to some extent. This quote from Prof. Grandin made so much sense to me:

"But the one subtle social cue I did pick up was tone of voice. And the interesting thing about the form of autism where kids mainly echo back what they hear is they often think the tone is the language rather than the words. They have to be taught that the words have meaning. "

When Jake wants to scold someone he says "Maxxx!" in the tone of voice used by a cartoon character from "Max and Ruby." Ruby is the big sister and often scolds Max, who is constantly getting into mischeif. She begins most of her scolding with a high pitched whiney "MAAAXX." When Jake is excited about something he will often exclaim "A clue, a clue!" I have decoded some of this echolalia by using the context of the situation, but having it expressed in so few words by Prof. Grandin has really made an impact on me. Jake is learning that the WORDS have meaning.. but I just have to keep in mind that he is going down a different path to get to the final destination of understanding.

Its hard for me to grasp that Jake has a disability that is not much different than being blind or deaf from birth. Its something that can be overcome, but probably the hardest thing for a child who is blind from birth to learn is that THEY are blind, everyone else can see, they're the different one, not the other way around. Prof. Grandin didn't realize that she thought differently than other people until well into adulthood. I can't imagine what it felt like.

One of my favorite people to read about since I was a child is Helen Keller. I never could get enough of reading her autobiography and I've probably watched "The Miracle Worker" in every possible media imaginable, including live theater. It always fascinated me how her soul could be trapped in a cage for so long, only to blossom and grow throughout her life. I find myself more interested these days in Anne Sullivan, Helen's teacher, because I need to be that person for Jake.

Saturday, September 13, 2008

Speech Therapy Day 6

Speech with Elizabeth went pretty much as usual. Jake gets wild with Elizabeth, and I think it is because he likes her. Today she tried to get him to "finish" one activity before moving to another, with little success. This week we are to work on "finishing" one activity by saying "all done" or cleaning up. We will also work on sequencing by asking Jake to do two tasks, which he already does pretty well, and moving on to three. Elizabeth said that Jake is doing better with referencing and looks to me for approval duing the activities. I have noticed that he seems to "check in" with me more often instead of seeming to be driven by his own engine with no regard to what I'm doing or thinking.

Occupational Therapy Day 3

Steve had the day off Thursday and Manny was napping, so Jake and I visited Cindy's place just the two of us. Jake was his usual crazy self, but Cindy managed to get him calmed down a bit. She explained to me that she may seem like she's floundering around trying different things, because thats what she's doing. I was pleased with the visit, although, as usual, certain things that she points out scare me to death. When she put Jake on her "scooterboard" (like a carpeted skateboard) on his belly, rolls him down a ramp towards a big foam cube.. he is expected to put his hands out and push on the foam. She says that its a reflexive reaction, he's supposed to protect his face. Instead he barely stays on the board and needs her to hold him all the way down, and he crashes face first into the pad, laughing his head off. He loves it, and wants to do it again, but not enough to ask or attempt to talk.. instead he gets frustrated and runs willy-nilly about the room.

There's other things about the visit that I'd like to express, however I just finished reading "Emergence" by Temple Grandin and my brain is just too full. What amazing insight into the autistic brain this book has given. Not enough, but some. I am beginning "Animals in Translation" right now. Some of the things that Cindy does are starting to make sense.

I'll write more later... right now my brain is tired. The inlaws are invading my space this weekend.

Sunday, September 7, 2008

Speech Therapy Day 5

Jake was still in super-excited mode when we went to Speech Therapy. There was just no way to slow him down long enough for him to focus on anything, but somehow Elizabeth managed to get him still for a few minutes. Jake found a sandbox full of dry beans and rice and she stripped him down to his diaper and put him inside. Although there were beans and rice all over the entire room by the time it was over, this activity actually managed to get Jake to focus on one activity for a few mintes. This gave Elizabeth and I time to talk. She helps me fine-tune what I'm doing at home, which is more than I can ask for.

It is sort of confusing that Jake will stay focused on one thing for super long periods (stimming) but can't be made to concentrate for more than a few seconds when in a teaching/learning situation.

One of the advantages that having Jake at full-throttle speed is that he talks a LOT. When he's in his slower, whinier more withdrawn mode he talks very little. I never know how long each stage will last or when he's going to switch, but hopefully therapy is going to help him even out a bit.

Today I swear Jake said "I want to go to the penguin store." (penguin store= the aquarium). I couldn't be sure that he actually uttered the entire sentence because he was turned away from me, and I couldn't get him to repeat it. However, a few minutes later:
Jake: "Ride car"
Me: "Where do you want to go in the car Jake?"
Jake: "Ride car, go to city."
Me: "Where do you want to go in the city?"
Jake: "Penguin store."

That was quite a conversation. I was thrilled with it. I think he says "Penguin store" because "Aquarium" comes out "cream eat" and he doesn't like being misunderstood. He is putting a lot more sentences together like later today he said, "Ride Car, go mexican restaurant, eat tacos."

Tomorrow morning we head to the "Penguin Store." I'm taking our babysitter with us for fun.

Friday, September 5, 2008

Anybody have a map?...

...because I'm not sure how I got here.

How did I get to where I am now? A parent of a "special needs" kid? Why have I been chosen to have this responsibility? Sometimes I wonder how my mental stability, my sobriety, my marriage, and my ability to raise both of my boys and treat them as fairly as possible, will ever withstand this enormous pressure.

Tonight we went to the city. Jake was happier and more exited than I've ever seen a human being be about anything. I worry about my husband sometimes, because he enjoys his own level of social anxiety, and, although he doesn't say it, I think he wishes for a more "normal" experience when we all go out together. The level at which Jake enjoyed our outing was a challenge in itself. He just couldn't slow down or stop screaming and exclaiming and laughing loudly , and with these highs comes some serious lows when he has to be asked to sit in his chair or not lay on the floor. We went to a fancy restaurant, and given the circumstances.. (1 year old and 3 year old would be a challenge for any family) we had a beautiful time. Jake had popcorn shrimp and french fries, Steve had trout almondine, and I had truffled risotto. Manny had whatever he wanted from our plates.

I noticed a middle aged dating couple at a table near us who were being a bit snarky about our messy and unconventional dinner arrangement (Jake in my lap part of the time, or Jake on the floor under the table part of the time, or Manny banging silverware.. or whatever). At one point I simply used all of my strength to hold Jake as tight as I could in my lap as he threw his weight from side to side and pinched my hands. I just had to do it for a few seconds and then he settled and sat. The couple were giving each other "the look" and were being quite rude. I caught only small hints of their conversation concerning us until Jake happened to take a break from his loud and constant verbal stimming without warning. I heard the lady say "..and NOW she's giving the BABY some of her risotto!" I had to laugh. Talk about being under a microscope. Thats just why you can't worry about what others think. I guess if you have nothing better to do in a restaurant than to examine someone's parenting choices right down to her decision to give a one year old the fancy restaurant version of mac 'n cheese, then I'm actually glad we showed up to stimulate what would have probably been pretty boring dinner conversation.

We had a wonderful time. Here's a video: