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.

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.

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.

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.