Good News!

As it was the end of the year, I was considering doing a post reviewing what has happened with Little Bug this year. After beginning to write it, I realized how incredibly long it was, so I decided to keep it short and sweet:

January- His lymphatic malformation appeared to be returning and he had another surgery consult. We were given the good news that it was lymph collecting in his cheek and would work itself out.

February- Got the last of his baby baby teeth- those pesky molars.

March- I began to wonder if something was wrong. It was the first time that Autism crossed my mind, but inevitably, Little Bug would do something genius and I would con myself into believing that I was paranoid.

April- Little Bug got to have Ama come up and stay at our house. Nick and Lennon got spoiled rotten by her wonderful cooking and company while I went to India for business. Ama heard Little Bug's last sentence for quite some time- I said shit! Little Bug had over 100 spoken words and used sentences all the time.

May- I got back from India and had a shock. After spending time with children there and some friends' kids, I looked at Little Bug with a new awareness. I could no longer lie to myself. I called Ama and balled and she said we will get through this. Nick and Little Bug came home and we had the talk about Autism. We began to really notice that he lined up objects and flapped.

June- Our journey into the world of Autism began. We went to our pediatrician and were so nervous. Little Bug wandered around the room, biting himself and playing with anything shiny. He then lined up all the magazines. Our doctor looked at us and said that he agreed, filled out a paper and sent us on our way. We had our screening with the social worker

July- Little Bug's second birthday at the Nas Nas. We had a blast and for a while, put our thoughts of ASD on the back burner.

August- Little Bug had his OT, speech, and hearing evaluations in one week. We realized that his vocabulary had whittled down to 10 words. 10. It was the first time we heard the words "severely delayed", "obvious retardation of..." They stung and left us gasping for breath and help. We also got a diagnosis- ASD. It was one of the moments where you know what's coming, you really do, and yet the shock still hits you.

You know the rest of it.....

So the good news is that our insurance has made a change. There is no longer limits on how many appointments a child can have if they have a neurodevelopmental delay. YAHOO!!!!!! We are going to be able to get him the help he needs.

Happy New Year!

Vacation Recap

My vacation is over. While that makes me sad, as I really enjoyed all the extra time for family, I have a feeling that by going back to work, I will be helping Little Bug. He will get back into the swing of things and back to his normal schedule, well minus school. Did I mention before that we have three weeks without school?

We were horribly unprepared for this long of a break from school- you know, being mere mortals and all. He has, for the most part, done very well without school and we have even been able to use this time to work on something new- falling asleep by himself. He did this a couple times at Ama and Apa's house (that's grandma and grandpa in little buggish) and now does it for naps and bed time at home too. One thing we were not expecting was for him to ask to go to sleep. Oh yes, you read that right.

In nights past, it has been a multitude of warnings followed by an hour plus of struggling to get the little guy to sleep. Not no more. He has asked for the past two nights to go to sleep. He signs sleep and makes his awe sound and then climbs into bed and sticks his arms in the air. That is your queue to out his shark blanket on him and then place shark on one side and fish on the left. He then takes his milk and binky, gives you kisses and hugs, and goes to it.

Nick and I were struggling with this new ritual. It is bitter sweet as I am sure any parent can imagine- one more thing he can do by himself. One less dependency. A little less alone time with him. We are really happy for him and know that it is the best. It just hurts a little, the same I imagine when your kid goes to school by themselves.

Over the course of vacation, Little Bug has added a flurry of words to his vocabulary-
Fuck- truck
Fack- Track
Fra- Crash
Frank- our dog
Nut- Nick ( fitting name, huh? :) )
Bath
No- Snow
We we- wet
Butt
tree- Train
Gee- Green
Ama
Apa
Dohmas- Thomas
Harold
Round
Chi- Chi
Fridee- French Fry
Other

He has also tried a lot of new foods and textures-
Marshmallows
Ham
cherry cordial- made him cry and throw it
Spinach
Baked Chicken- no dice
Reese Pieces

His self injuring has changed. I am not sure if it has to do with the Ps and Qs and chewie, but since he has them, he has stopped biting himself. But, and there always seems to be one, he has begun hitting himself in the head with his hands. I don't know why, but that seems less alarming and more like stimming than self injuring.

I have to admit, this vacation has had some hard times like when his other grandma gave him underwear in his stocking, because as she says, all the other kids are potty trained. It made me cry and it hurt. But we will get there. Another hard time was to watch him with E, our friend and old roommate's older son. E has a little brother J who is one month older than Little Bug, but there is a light year of difference in development. Hanging out with Little Bug usually causes J a lot of stress. E was trying to play cash register with Little Bug like he does J- How much does this cost and Here's 20 bucks. J will give a price and carry out the transaction. Little Bug just wanted to run the money in the credit card slot over and over again. Its one of those times that I think will always hurt. Not from jealousy or envy, in fact I can't label the emotion. But it is raw and there. I imagine there are lots of parents who feel this way and those with special needs children probably just are confronted with it more often. And yet, I am unprepared, dear friends. Every time it hits, I am left feeling small and helpless and almost panicky.

In the end, I think of were he was and where he is and it passes. It always will.

Ah, vacation!

I am on my first vacation that doesn't involve major medical emergency in three years. It started off perfectly- with a ton of snow. Tacoma had a foot of snow by the time it was done and it was beautiful. Little Bug had so much fun playing in it. We did that at least twice everyday.

Our vacation continues by coming down to Grandma and Grandpa's house. Little Bug is so happy here- he didn't take as long to warm up to them this time and asks for them now. "Apa? Ama?", where the first things out of his mouth this morning.

We had family Christmas last night and Little Bug actually opened some presents. We only had to go on two walks to help him deal with the stress of all the people. We are really proud of him- he only had two minor meltdowns and he was able to tell us that he needed a break.

Being that today is Christmas, Nick and I are exhausted as we stayed up until midnight building the Thomas the Tank Engine shed and track set that Little Bug got for Christmas. Of course, Little Bug woke up at 5 and we had to restrain him until 630. When he finally came downstairs, he saw it and said, "Wow....."

We haven't talked to him since. We might talk to him soon, but for now, we are going to let the perservations and the good times roll. Wow indeed.

Dropping the A word

I read an article yesterday on CNN regarding how to tell your child that they are really sick. It made me think, how and when do you tell your child they have Autism. I can't recall in all the Autism books I've read, discussing how to inform your child of this.

For me, when I think about telling Little Bug, I don't want the conversation to be about limits- "Because of Autism, you can't....". I don't think that's true. I may know what the odds of doing something- speech, dressing or toileting independently, living on his own, getting a job are, but I don't know if I would tell him that he can't do something because someone says the statistics show that he won't.

I have a feeling that although this isn't necessarily applicable right now, I will mull on this for a while.

The past few days have been a roller coaster ride of severe ups and downs for Little Bug. We think that is because he hasn't gone to school in a week due to the weather. We try, we really do, to do the magic that Therapists A and L do, but we are inadequate for we are merely human. (Seriously, some of the things they can do is awe inspiring and make me wonder if they are other worldly.)

He has become very routinized in everything- he has to put the puzzles together in the same order each time, eats his dinner in the same pattern, and has been creating lines of everything. He had the mother of all meltdowns yesterday because he couldn't get the little snow balls that he had created to line up perfectly. He laid face down in the snow and refused to get up. At 32 pounds and over 3 feet tall, he is becoming a physical force to be reckoned with when he becomes Captain Noodle Boy! (His super power is a complete lack of control over his body allowing him to pool like liquid into a puddle of a toddler) I briefly thought about donating him to charity last night when he bit the dog, but reconsidered when he said sorry to the dog and gave him a hug.

On the upside, we tried a new food- Cars Chicken Noodle Soup without the Soup. He ate half a can of it. The only new road bump for sensory issues is his increased tactile and auditory sensitivity. He has begun covering his ears at airplanes and the vacuum and now cries when something gets on his hands.

I think we will survive 3 weeks without school.

You're the devil in disguise

Little Bug often lives up to this with his therapists. We will tell them that he has problems dressing, biting, and with sharing and yet with them, he is fine. They have said that usually kids go through a honeymoon period with their therapists. As a parent, this is frustrating as all hell because you know that your kid is having a hard time with something and yet when help shows up, not a problem. When they leave, suddenly shoes and socks become an issue and giving a cat a bath would be easier than Little Bug. These are the times that you think things like Why can't he just put on his damn shoes and then instantly feel like a bad parent.

We discussed it with them in depth as we feel like they aren't able to maximize their time with him as he doesn't have the really bad outbursts that he has with us. Their solution was somewhat surprising- tape it and like a football coach, they will go through play by play and tell us how we can improve what we are doing for Little Bug. Not 24 hours after our discussion, we have three tapes- getting socks on, getting boots on, and putting on a coat. I imagine to the neighbors instead of doing those activities, it sounded as though he was being tortured or murdered or both. Nope, just getting dressed folks- nothin' to see- move along.

(Miss Cleo moment- I am seeing a *huge* change in topics and a slight chance of foul language.) Does anyone have a family member- or several- who just don't get it? They don't get why your kid can't just eat dinner or can't just put on their damn shoes or any other thousand examples. This has become a huge problem for Nick and I and his parents. Nick's step dad's family always gets together the weekend before Christmas. Unfortunately, this involves 30+ people in one house. Little Bug has a hard time visiting our friends who have 6 in their family. Neither Nick or I can attend because we both work.

We have tried explaining that new situations are extremely hard for him and that we aren't able to just go do things on a whim. We have to prepare and explain and have pictures in order to talk up a situation in order to minimize the meltdown- notice I didn't say avoid. Of course, since it is the holidays and apparently you must do all the holiday traditions you can think of in the shortest amount of time in order to be a good person, Nick's family has forgotten this and everything we have told them about Lennon.

His mom called and wanted to know if we would let them take him to this party! (excuse me as I roll around on the floor laughing and then wiping the tears from my eyes) NO!- that is the answer. Can you imagine giving your mostly non verbal toddler to people he doesn't see that often knowing that he will be taken to meet over 30 people he has never seen before and be expected to open presents without the two people he depends on most in the world? NO! That would be hard for any child- typical or not.

Now, excuse the hell out of me, but I am so tired of explaining the same damn things over and over again. It reminds me of what my parents used to tell me- The answer hasn't changed since the last time you asked this question, which by the way was 5 minutes ago. If you ask again, the answer will still be the same, but you will be grounded. SON OF A BITCH, this is frustrating.

I put myself in their shoes and I can empathize- they have dreams for what they would experience as grandparents. They would see their grandchildren anytime they wanted and be able to flit off on a whim for any number of fun activities. They would be able to do all the traditions they had when they were little kids and show their grandchildren what was important to them.

Well, you know what, we had dreams too. Dreams that didn't involve therapies 4 times a week and then follow up 7 days a week. They didn't involve picture schedules or having every minute of every day mapped out. They didn't involve sensory issues or regression. They didn't involve staying up at night gripped with fear because you don't know how you will pay for the therapy your kid needs.

But you know what, the old dreams are gone and it is time to make new ones. This happens for all parents regardless of whether your child has special needs or not- you want them to be good at sports and they aren't. You dreamt that they would be a Christian and they decided nope, not for them. We have to move on and adapt. By trying to adapt your children or grandchildren to fit your dreams, you are creating misery for everyone involved.

Catching up

That is what we were told yesterday about Little Bug- he is catching up developmentally and in a lot of areas will be completely caught up by the time he is three. Therapist A, who spends the most time with him, says that he has shown tremendous progress and at times believes that perceived cognitive delays are due to how information is asked for or presented and not whether he is retaining it.

She did state that in certain areas- like speech and social development- he is still significantly delayed. She also said that for memory and problem solving he is advanced.

We wrote his new goals yesterday-

1. Two word sentences. Waiting him out and prompting him with sign will be our technique.
2. Descriptive words. I don't get this one as he has two descriptive words in speech- EWW and Hot- and several in sign only.
3. Colors and Shapes. He can match like nobody's business and knows his colors. If you ask him to point to the blue whatever though, no dice. Same with shapes- line up three and he can't find the circle if you ask for it. But he can recognize the difference, again when matching, between a parallelogram, square, rectangle, and rhombus. Same with oval and circle.
4. On, under, etc. If you tell him to look under x, he wanders around and doesn't seem to understand these words.
5. Part, Purpose, and Category
6. Yes and No. For example, holding a dog and saying, "Is this a cat?". Also, more concretely, answering questions. If you ask, do you want a cookie, he will say no and then cry when you don't give it to him. If you were to ask, do you want to eat the cookie, then it would have been a yes.
7. Flexibility. Encouraging this more in play and speech as he is very routinized.
8. Eye contact

I am so proud of all the work he has done. It shows every day.

In other news, and probably more importantly to Little Bug, he has new SHARKKKKS (he develops a lateral lisp whenever he says it). We went to visit some good friends and they got him a 24 piece fish jigsaw puzzle, a shark pillow and blanket. He carries the pillow with him yelling MY SHARKKKKS and wants to sleep under the blanket. We figured the puzzle would take him a couple of weeks to figure out, but he can do 20 of the 24 pieces by himself, so probably not.

He did again!

Roll. Light. On.

All spontaneous, quite out of the blue actually. We had sausage for dinner and they were cut in little circles. He grabbed one and rolled it around his plate saying, "Roll....Roll...Go eat, eat.... Roll."

I am at a loss for words- this is the third day in a row that he has done something unexpected and left me with tears of joy running down my face while i stare at him with a bewildered look on my face.

Shock and Awe

Not the military campaign, silly, Little Bug's current campaign around our house. All day yesterday I was on cloud nine- nothing could bring me down. I couldn't help but be so excited for him. What next? What will he do? That's all I could think. Apparently, he was considering ways to one up his performance from Wednesday because he busted out the following words last night:

Look
Sheep
Cheese
Ow-si (Outside)
Puzzle
Helper
Bath
Yuck
Eww

But there's more- these were all spontaneous. That's right- no repeating words, no prompts of "Look and Listen. Little Bug- SH- EE- EP. Little Bug do- SH- EE- EP."

What was even more flabbergasting was how casual they came about- he walked up to me with a piece of cheese and said- CHEESE! and then just wandered off leaving me to stand in the middle of the living room with my jaw on the floor and tears streaming down my face. And it just kept escalating. We watched Toy Story last night and Bo's sheep are being threatened by RC and Little Bug looked at me and said, " Daddee! OH NO SHEEP!"

I don't know what happened and I am afraid if we start analyzing, we will only make things more difficult. Please read this post from Both Hands and a Flashlight as it perfectly describes what I mean:

http://www.bothhandsandaflashlight.com/2008/12/04/unconscious-competence/

(Psst- do me a favor and tell whoever you believe in- the universe, God, Lord Shiva, buddha- thank you.)

Holy Word Explosion Batman!

I have never heard Little Bug say so many new words in one day- Purple, Chicken, Mee Ooo (miss you), Jake, Yeena (his name), Bite, and Pop. He also said his first unprompted sentence yesterday that I have heard since he was 11 months old- I wan juuush (I want juice). He said Want Juice unprompted for the first time in class yesterday- apparently, Therapist L about had a heart attack.

I can feel hope creeping through me from the dark place it stays locked away. Like I said, you should have hope, but you need to do the work. In honesty, part of me is scared- scared of more regression, scared of more loss. But I'll tell you something-

I believe that Little Bug can do this. I believe in him more than anyone else and with all my heart. I know that he will reach his highest potential.

To tally his progress, he now has 70 words total, of which 49 are unprompted. That means in the 4 months to the day that he was diagnosed with Autism, he has gained 60 words total and can say 39 more words unprompted. He'll reach his potential.

Autism and the Holidays

So this post is by no means a suggestion for what you should do for your holidays- just our master plan. For holidays in general, we try to keep it short and sweet. If we go somewhere, 3 hours is the limit as Little Bug quickly gets overstimulated. We have told our family about his ASD and also tried to educate about ways to help him. We also try to teach them signs that are appropriate to the activity while we are there so that they can make a connection. Specific to Christmas, we try to keep the decorations to a minimum. Little Bug loves them, maybe a little too much.

When it comes to presents, we let people know that he's not really interested in the idea of opening things (for himself, those under the tree that aren't supervised are fascinating to him. Last year, I wrapped the same present for Nick 15 times. Little Bug didn't open a single present for himself last year). He just doesn't get it. In our experience with him, he would be happy to carry around the wrapped box without ever opening it to discover what is inside. He tried to do that with one of his birthday presents this year and became upset when we ruined it by opening it. We have told family that we won't force him to open things. They are welcome to open things for him or even have their gifts unwrapped and just there to peak his curiosity.

It sounds silly, but I think we put so much effort and want into making a "perfect" holiday for our kids that sometimes we lose perspective. We forget that the stereotypical family around a tree opening presents in pajamas for an hour isn't a reality for most little kids and usually just not an option for kids with ASD. There is too much going on- lights flickering on the tree, people talking over each other, smells of lunch or dinner cooking, and often times strange places- that causes some kids to just want to escape.

We also try to be flexible and create back up plans. We are going to Grandma and Grandpa's for Christmas and are making sure to have distractions as well as rewards ready. It doesn't have to be complicated- we are bringing Signing Time, the stroller- to go on MOOO walks, and a few reward toys to help Little Bug deal with changes.

We also try to be flexible about the demands we put on him. While we know his therapy and at home follow up is important, so is perspective. One day of not working on certain things will not derail everything and may be needed. Imagine being so overwhelmed you need to bite yourself, hit your head on the floor and scream. Then imagine being told that you need to look people in the eye and try to talk. You can't and because you are independent you would shelter yourself from it by leaving or telling people no or simply shutting down. We do those things for him.

I look at our dreams and expectations and will be honest- this wasn't it. But, it is so much better than I imagined because he has a voice and place and is respected and we are learning more about him and each other every day. Our holidays may never be typical and we may never see him do other things that other people can do. We may always have to have game plans and escape routes and alternate endings. I realize that I have to be okay with this as I cannot control it or change it. I realize that I have been given a gift- our son.

Christmas Trees

They are maddening- not them themselves, but Little Bug's reaction. He likes to lay under the tree and flap because of the way the lights look when you move your hands really, really fast in front of your eyes. Which is kinda cute until he sticks his legs into the middle of the tree and gets stuck- then not so funny anymore.

We put it up yesterday and spent most of the day saying one of the following phrases:

• Christmas lights aren't for eating- for looking
• Don't put your eye on the Christmas tree
• Don't chew the ornaments
• Please get your legs out from inside the tree.

These all sound like minor things, but at times it does get maddening. We replaced all our ornaments with shatter proof ones so that he can't hurt himself. We have tethered the tree to the wall and minimized the number of ornaments. Hopefully, he will get used to the newness of this. Last year, he didn't do much of the flapping and didn't really bother the ornaments- he would just stand in front of the lights and look out of the corner of his eye at them.

We went to Zoo Lights and he has such a great time. They now have a shark exhibit and he loved it! We sat by the sharks for about 45 minutes or so and then saw the fish for about 30 minutes.

Moooooo!!!!!

That is what Little Bug calls the moon and Christmas lights. He has been going to the door every night the week signing MOON and WALK and then yelling MOO! He loves night walks. We bust out the mittens, hats and scarves, grab the flashlight and take the dog. We have a mission- to find different Christmas light displays every night. We wander around the neighborhood and look at the lights. Little Bug tells me the colors- some in sign and some in word approximations- and I am happy to just listen. I relish this time and the words he has and I am incredibly thankful for them.

Although he can't tell us much, what he can say is fascinating to me because of the logic behind it. For example, he uses MOON and WALK even though he knows night. He signs SPIDER and says BAA-AAA! If we tell him it is time to be quiet and go to sleep, he stops talking; instead he simply signs away in subversive protest. His logic astounds me and makes me crave knowing more.

On a much different topic, Little Bug will run out of therapy coverage by insurance after 4 months as our policy, which does include a neuro-developmental clause, only allows for 36 specialty appointments. Nick and I have thought of many options, some include asking for an Independent Medical Review, get training from his current therapists in order to do it ourselves, and not seriously but as a desperate idea- moving. That last thought made me want to know if there was a way of knowing what you are getting into in terms of ASD care before moving. I provided the legislative link yesterday and today i wanted to provide another. It is the Easter Seals Autism State Profile page-

http://www.easterseals.com/site/PageServer?pagename=ntlc8_autism_state_profiles

Hopefully, if you really are going to move, this will help you.

What do you want?

Ever wonder what action your state has taken for Autism Legislature in the past year? By clicking on the link below, you will be able to search for those answers:
http://www.ncsl.org/programs/health/autism.cfm

I have to admit, I was pretty shocked when I looked up my state. The report showed that many items failed and some were vetoed. The last action taken on legislature specific to Autism was in March of this year. At first I was so pissed about this- blindly hateful even. Then I realized- What would I ask for? What am I doing to help it become a reality?

Anger only motivates for so long, until you crash in burn. You have to have a long term source of fuel. I think I found mine.

Little Bug had therapy yesterday and it went really well for the most part. He is having a hard time being all done with an activity or item and seems to be focusing on items that involve proprioceptive input. Other than that, he had a great day. His therapists are recommending that we write new goals for him- as he has met about 75% of his other goals.

He now has 60 words, of which 46 are unprompted. It seems that in speech, we have reached a plateau in acquiring new words, but are still gaining in how many words are unprompted. In sign language, the upward trajectory continues- we are at 111 signs, all of which are unprompted.

Preoccupation with Certain Topics

The title of this blog is a common symptom of ASD. Google Autism or ASD and that is usually one of the symptoms listed under the category of Limited Interests in Activity or Play. Little Bug definitely exhibits this one.

Now, I realize that many children have favorites- a favorite show or animal, place to go or thing to eat. Favorites that at times can border on obsession. The difference here is that it is an all consuming obsession- actually three:

1. Fish- Whenever we are out and about, he asks for fish. As I have mentioned, he has a map in his little brain that keep track of where the fish are. We have had to change how we get from our house to certain places as driving past places where the fish live without stopping result in a meltdown and Little Bug will often try to unbuckle himself from his car seat. Needless to say, he talks about fish constantly- not sure what about, but I do know it is about fish. We are unable to go to the grocery store without a meltdown, as apparently there is a federal law that says all grocery stores must have a pet store that sell fish next door.
2. Buses- He now firmly believes that whenever we are going to go somewhere, we are going to go by buses. He will stand by the door 3 to 5 times a day and yell bus. He will then gather every one's shoes and line them up and physically try to make you put them on so he can go on a bus ride. Walking the dog now results in meltdowns because we aren't taking a bus to do it.
3. Sharks- One would think that this should be part of fish, but this is a very separate obsession. He watches Discovery Shark programs, baths with his sharks and discusses them at length throughout the day.

Last night, Little Bug woke us up every hour to discuss fish. He would tap me until I was awake and say, "Daee, Fish! Fish? Fish, Daee." Every. Hour. All. Night. Long. To me, this has passed over favorites and into the land of obsession. An obsession is defined as- Compulsive preoccupation with a fixed idea or an unwanted feeling or emotion, often accompanied by symptoms of anxiety. A compulsive, often unreasonable idea or emotion.

Uh, yeah, we have an obsession. His little voice gets frantic and he appears anxious and nervous when discussing these topics. If anyone has ideas about this, please let us know. I don't think I am a hard ass, however I think it is unreasonable to indulge a trip to the fish store to get a gallon of milk. I am all about picking my battles, but at some point, we have to find a solution rather than assuage the problem.

Not sure if this is progress, but it was funny

One of Little Bug's goals is to be able to take off his pants and diaper in order to get ready for potty training. He has been working on this and doing pretty well. He needs help with the zipper and snap on his pants, but can get that diaper off in no time.

Last night we attempted to go to sleep in the usual manner- which means we watched a movie together on the couch. When that didn't work, we tried going to the bedroom and laying down. I rolled over on my side so that I wasn't facing him. If he sees that you are awake, it becomes comedy hour.

I was almost asleep when he kicked me and cried, "Help Daee!" I rolled over and noticed there was something wrong with his sleeper. I tried to zip it up and it was stuck. But then I realized, it shouldn't be unzipped and unsnapped.

I called for Nick and he came in and turned on the light. I wish we had taken a picture. Little Bug had unzipped his sleeper down to his knee. He then attempted to pull it off his shoulders and got the top of it stuck at his elbows. Apparently, he gave up on that and tried to take off his diaper but could only get it un-taped.

So mental picture for you- he was standing in the middle of the with his sleeper zipped open to his knee- one leg halfway exposed and the other completely covered. His belly, shoulders, and chest were exposed, but his arms were pinned to his sides by his sleeper. His diaper was bulging in the back and hanging out the front. I laughed so hard I cried.

This is one of those moments that I wish I could ask him some questions. WHY? What were you hoping to accomplish?

On the bright side from the bed's and parents' perspective, at least he got caught. It could have been worse. He could have succeeded. Then we would have been in trouble as I am unsure if Nick would have noticed his lack of pajamas when he came to bed.

Thanksgiving

One of my favorites lines from Shrek the Halls is- "Momma always says Christmas ain't Christmas til somebody cries." For our family, you can delete Christmas and insert just about any family function where we all get together. Yesterday, we went to our grandparent's house and had a blast. It took Little Bug a little bit to get warmed up as there was a new person there and it always does regardless of the circumstances.

I am thankful for Grandma and Grandpa and all that they have given us- support, love, laughter, and sometimes, a good kick in the ass when it's needed. They truly are the kind of people who would never turn you down when you are really in need.

Then we went to Nick's parents' house. It was interesting- there was gender bias, unabashed teasing, and some accidental violence- talk about a hoot and holler. Its easier to logically break this down into- SPECTACULAR, GOOD, BAD, UGLY.

SPECTACULAR- Little Bug did great yesterday! He only had a few minor skirmishes with other kids- very typical skirmishes. He did a great job of finding a way to calm himself down when he was upset- by going to the toy room and lining up the cars on the garage. He is doing a great job of self regulating. He also said three new words- HOUSE, LIES, and HOSE.

GOOD- We all managed to be in the same house without any serious fights for 3 hours. That may sound sad, but its true and the way life works out.

BAD- The cousins showed up with bacterial pneumonia and didn't bother to tell us. This is something that we have struggled with Nick's family for all of Little Bug's life. We have consistently been lied to about illnesses etc.

THE UGLY- Although no one intentionally went out of their way this year to call me Little Bug's mom over and over, they did feel the need to not acknowledge me as an Uncle- only as Blake- and to call me she several times. This gets old as it is really passive aggressively done. They will do this to me and then wait for me to get upset and leave the room and apologize to Nick.

Little Bug had a horrible time on the way home- it was too many people and too much going on. He started biting himself while we were there and that only got worse once we were leaving.

The hardest part of yesterday was when one of the cousins began to yell at Little Bug, "What's wrong with you?? Why can't you talk?? Do you talk? What's wrong with you?" over and over again. I tried to explained that Little Bug doesn't speak like other kids, but he can communicate with his hands and a few words. But was overrun by others who thought it would be better to not talk about that and simply say Little Bug can talk some. This is going to end well.

Oh- I forgot to explain the accidental violence. Little Bug was sitting in the back seat with the left overs that we we taking home and decided he wanted to eat 3 dinner rolls. Fine with me- in fact, I celebrate when he eats. I grabbed the container to get them for him and accidentally hit Nick in the back of the head. I got the dinner rolls out and then when putting the container back, hit Nick in the face with the container. Nick was a good sport and didn't get mad- he even laughed.

All in all, we are pretty lucky. We got to see Grandma and Grandpa even if only for a few hours. Little Bug not only didn't hurt any of the children, but he actually played with them and had a decent time. Nick and I were able to laugh together and at each other. Little Bug ate lots of food. We have a lot to be thankful for.

Untapped Resources

On one of the blogs I follow, I read about how a family has discovered that their son can read- at 3. I was amazed and happy for them. I can definitely empathize with the uncertainty of never knowing what your child will accomplish and then being blindsided in a great way.

Little Bug often does this to us. In a previous post, I posted a picture of anatomically correct sharks he drew- at 2. They had gills and claspers- all in the right spots. All correct. I look at his puzzle skills. He can do jig saw puzzles now. Not the kind where you match the picture of the dog to the picture of the dog. But a 12 piece jigsaw puzzle or a 24 piece bear puzzles- without any visual cues. Who knew?

I remember my protests when they did his cognitive evaluation. My concern was how do measure the abilities of someone who is limited in speech? I firmly believe that the ability to speak doesn’t demonstrate your intelligence and that a lack of speech doesn’t demonstrate a disability. We have to do better than that. I look at what that family discovered about their son and what we learn about Little Bug and know for a fact that there are so many untapped resources there. We simply have to find a way to reach them.

On a totally different front, empathy has arrived- even if for a brief moment- to Little Bug. This is huge, as many children with ASD have difficulty with feelings and understanding that what you know and what someone else may know can be separate- separate thoughts, emotions, etc. Nick and I have had horrible colds this week and I stayed home from work yesterday. Nick went to work and left me and Little Bug sloth like on the couch- where we stayed.

I started coughing and then rubbed my chest. Little Bug looked at me and signed DADDY OWIE and then did his head tilt to indicate a question. I signed and said DADDY SICK and then pointed to my chest and signed and said HURTS. He rubbed my chest and then signed SORRY DADDY.

I was so excited for him. For the first time, he got that someone else had feelings and that they affected him.

Insurance

We all know that Insurance and Autism put together usually equals the following for many families:

1. Debt, debt, and more debt- as many therapies aren't covered. One aspect that I think doesn't always get press is that even when it is covered, the sheer volume of co-pays due to the number of visits necessary is astronomical
2. Stress- Families often spend a lot of time fighting with the insurance companies. I know that when it comes to ASD, I have had to get my employer involved as our insurance company gives us nothing but contradictory information and unclear advise.
3. Denials- It is all too common to have claim after claim denied, even when you have insurance and have played by all the rules.

Personally, our company has a nuerodevelopmental clause on their policies which require our Insurance Provider to cover the cost of 36 visits a year. Additionally, there is no age limit on that.

Some of you may have noticed that the number I said was 36 visits- total for all specialists for an entire year. Once Little Bug starts going to speech therapy, he will use those up in 4.5 months. That leaves us with 7.5 months to pay for out of pocket- and we have insurance. We have good insurance.

I bring this up because of the following article:

http://www.chicagotribune.com/news/local/chi-autism-coverage_21nov21,0,4253235.story

I was so excited to hear about this and am hopeful that it will pass for them. I was also shocked by one particular section-

Further, Sen. Dale Righter (R-Charleston) argued the measure would cause the number of people diagnosed with autism to grow, therefore increasing premiums for other policy holders."I am not willing to place at risk a much larger group of people who might lose their health insurance through their employers in order to deal with this issue in this manner," Righter said.

First off, have any studies been done to show that states that mandate coverage for Autism have a dramatic jump in the number of children getting diagnosed? Maybe I am being naive, but I find it hard to believe that tons of people would go through the trouble to trick doctor's into diagnosing their children with Autism so that they can take advantage of this policy. Secondly, lets do the math to figure out the amount per person this would increase premiums:

4500- that's the number of families that qualify

36000- that's the coverage limit

12831970- that was the estimated population in 2006

$12.62 is the average increase per person. I could hang with that. In fact, I am sure that we do all the time. Every time an insurance company adds a coverage that wasn't previously offered, that trickles down to our premiums.

Occupational Therapy

Little Bug had his first session with his OT L yesterday. She wants to teach us brushing, but did caution that it would be done every hour and a half except when he is sleeping for two weeks. Other than that she didn’t give us too much information. Nick is going to follow up with her in order to get more information before we decide to go ahead with it.

She didn’t have much information about the self injury- she said that until he gets more speech, we won’t know why he is doing it. To me, that is a non answer. Little Bug isn’t in speech therapy and even if he was, it isn’t a miracle! It takes time and work. We are going to have a meeting with his therapist and our FRC as we don’t feel like enough is being done about these behaviors. When it comes to hurting others, the strategy is to prevent it- which means that while the intended victim doesn’t get harmed, someone still does.

Going back to the visit, L plans to have a snack time next time in order to help get Little Bug to try more food. She is also going to do bathing and dressing in future visits.

Right now, Nick and I are frustrated as we watch our sweet boy hurt himself for who knows what reason. Everyone seems to be pinning their hopes on speech. Well, let’s analyze this for a second. Children by the time they are 2.5 should have a vocabulary that is close to if not exceeding 300 words and be able to use two to three word sentences. Little Bug has 53 words, of which only 30 are spontaneous. The rest we prompt him into saying. While I am not saying that he will never reach that summit, I believe that we need an interim solution.

You can always have hope- you *should* always have hope. Hope that there will be change, hope that your child will achieve their fullest potential, hope that you will be able to help them overcome whatever challenges they face in life. But while you are hoping, don’t forget to work and plan and strive. Nothing is achieved without a great amount of work. I am the kind of person that always prepares for the worst. To me, pinning our child’s safety on speech therapy and the hope of speech is not an option. Now, we just have to have a plan.

Autism- its all around us

Before I get to the meat and potatoes of this post, I wanted to share something I noticed- Autism. It's everywhere. One of my favorite things to watch is the Daily Show with Jon Stewart- I heart some irreverent, politically incorrect humor. I was listening to the show from Tuesday night, when low and behold, Autism came up. More specifically, Dennis Leary was a guest star on the show and was discussing his recent book and the chapter called Autism Schautism which incensed the whole community. He went on to defend himself stating that the paragraph was taken out of context. What he really meant is that there are parents who get their children diagnosed with ASD or ADD or any other number of syndromes so that they can get free help. Right, because that belief is so aptly expressed by calling people with Autism stupid and lazy. The mind reels.

Anyway, lets talk about Little Bug. He had a pretty good night last night. Only 1 meltdown, which is great. He had a school field trip to Odyssey yesterday- think Chuckee Cheese and McDonald's Play Place and bounce houses all rolled into one glorious sensory experience. He had a blast for the most part. He was able to deal for about an hour and half and things slowly went down hill from there. A friend recommended beefing up Little Bug's sensory diet and Nick and I think this is a great way to do it. They have slides that look a lot like the squeeze machine Temple Grandin came up with and another one that has a series of rolling pins. Basically when you slide down, the rolling pins run over your body and apply some good pressure. Little Bug loved these and had the route from the bottom of the slide to these slides mapped in his little brain after one trip.

As Nick and I journey down this path together, we realize more and more about Little Bug every day. We realize that his limit for commotion or newness is about 2 hours. After that, all bets are off. This is something that we are trying to get Nick's parents to understand, but there has been some resistance. For Thanksgiving, we told them that because there are going to be people there that Little Bug doesn't see often, we will come for three hours and then leave. We also created the boundary that if Little Bug has a meltdown, we would leave as there isn't a safe place for him there and you can't really escape people. So of course, they called and told us that dinner would be at 2:00 PM but to come down in the morning. *exasperated head shake*

Anyway, Little Bug has quite a few new signs-
Rainbow
Carrot
Pear
Grapes
Fruit
Lettuce
White

and five new words-
Ca-cat
No- nose
Juice
Dorie
Daddee

All said, he has 53 spoken words and 101 signs! This is amazing!!!!! Finally, Little Bug will begin OT today and Nick is going to push our OT L about the self injury and routines as we don't believe these have anything to do with speech, but his need for certain kinds of sensory input. More on that later.

Routine, Routine, Routine

Little Bug is definitely a creature of habit and has developed routines for everything. We may not have been informed about them and we may have even helped create them without realizing. The thing is, we now are bumping into routines that we didn't realize we had. Little Bug has been wearing his Lightening McQueen jacket a lot. Today, when they needed to take me to work, Nick tried to put on Little Bug's winter jacket. OH MY GOODNESS- the ear piercing screams! I was outside getting the car started and could hear him. Holy S*** batman, its 3:40 AM which means it is officially TOO EARLY FOR THIS. So of course, Little Bug got to wear his Lightening McQueen jacket- which is basically a glorified long sleeve T Shirt with a zipper. We are not talking winter weather protection here folks. I am all about working to help Little Bug become more accepting of change, but not so early in the morning with screams that wake the dead and may very well get us evicted or have the cops called. No joke, it sounded like someone was being murdered this morning.

We have also noticed that *everything* has become scripted by Little Bug. Maybe we are fools, but I feel like this happened so subtly that we didn't realize. Dumb parents. Anyway, he has to eat his food in a certain order- meat, then veggie, then starch (that is if he eats all three things and if he eats at all). He must play in the same pattern every day- swinging with parents, then floor time, then eat, then bath, then jumping, then getting dressed, then jumping, then cars, then swinging, then sharks, then jumping, then bed. I am certain that we have helped to create this rigidity, but I also believe that this is something he clings to as a way to help him deal with the sensory input and to have a sense of control when so much must feel out of sync or control to him.

It seems like we have been so focused on the more apparent things- self injuring and speech delays- that we didn't notice the little things. We are going to have to bring this up with his therapists and develop a plan as it is becoming a huge issue. If we need to go to school in a different direction due to construction, Little Bug gets incredibly upset and starts yelling and gesturing in the direction we could have gone. Any slight variation in routine that is not in his control is becoming a major deal for him.

There are days when I wonder how much has changed about him versus how little did we notice or understand before. I don't know how to say this quite right, but he has always been prone to "meltdowns" or "fits" for unknown reasons. From day one, we have always scratched our heads and been unable to explain the endless crying, the hours of screaming. At first we wrote it off as just a baby thing. Then it lasted longer. Then he was 18 months and still having the same kind of meltdowns he did before for just as long. Then he was 2 and no changes. Now we are coming up on 2.5 and still no changes. He still wakes up during the night. He still has "meltdowns" for no apparent reason that he can't soothe himself out of and we can't help. It makes me shake my head because I wish we would have seen. I imagine many parents of special needs kids are bitten by regret every once in a while. I think its better to shake the damn thing off and keep moving forward, as looking backwards is so easy and painful.

Aggression

Little Bug had a really hard day yesterday. It all started at about 6 AM. He wanted milk and signed it and then DN gave it to him. Suddenly, he was horribly upset. We still don’t know what caused it. Screaming and crying without warning and for no apparent cause. He eventually calmed down in time to take a bath- great, we thought. We can work through this. Together- as a team.

Anyone who is familiar with Little Bug knows that he has recently become more and more opposed to baths. They are horribly upsetting to him- especially washing his hair and drying off. We also must stick to a routine. Yesterday’s bath started off badly. He was upset that he had to his PJs off and then upset about the diaper. I am not sure what to call it, but I know temper tantrum isn’t right. So, I will call it a fit. In his fit- of rage, fear, too much sensory input…- he damaged the bathroom by pulling some of the shower wall material off the half wall.

After the bath, DN brought him out to the living room to get dressed- as per usual. The thing is, we forgot to put on a short show for him. Little Bug lost it. He was in almost hysterics. Finally, we left for school and he fell asleep.

His therapist A came over yesterday and I showed her the damage. Luckily our landlord is only pissed, but glad that we were honest. His therapist looked at his ABC charts- Antecedent, Behavior, and Consequence- and decided that he needs a break in the afternoon. She also asked about speech therapy as she feels that a lot of his self injuring and violence is from frustration. Maybe I am being unfair, but I am not asking for a magic pill to erase this or some fish oil to cure him. I am looking for ways to help him. To. Keep. Him. Safe.

We have him on every waiting list we can find in both Pierce and King counties. We are doing all we can to get him sign language and have incorporated the PROMPT system into our home therapies. We are talking about a much loved little boy whose parents are trying to protect and care for and nurture. I had a friend reach out to one of their old therapists and she gave us some good ideas and offered to discuss this with her.

Cross your fingers as we trying everything we can right now for him.

Internal Compass

One of Little Bug's more interesting abilities is directions. He can determine whether you are going the right way once you've mentioned the destination. For example, if we tell him that we are going to school, he knows where we are going and how to get there. I don't know know how he knows these things. School makes sense as I think he knows how to get there based on memory. Other places such as long distance drives to our grandparents' house makes even less sense as it is complicated.

Other places, such as where are the cats in the neighborhood are, is a bit harder to explain. We take our dog on at least three walks a day and during these walks, Little Bug will point out which houses have cats. Now, maybe he has a photographic memory or is just more perceptive than I am, but damn! I am lucky to remember to pay the bills, my family's birthdays, and the pin to my ATM card. His other bizarre map- fish. He can tell you which places have live fish. From the hospital, to the conservatory, where the pet stores are, and the ponds. It is truly amazing.

One of his coolest memory based and cognitive reasoning skills is puzzles. He is amazing at puzzles. He was able to do his ABCs and number puzzles at 1. He then was able to complete puzzles that weren't the chunky cut out kind- you have a picture of a butterfly and then you put the butterfly piece on top- nope, he can do the puzzles that make up a picture.

Its often very hard to get him to sit and focus. We have joked that he may need anchors on him to keep him in his chair at school. When it comes to puzzles and fish, he becomes zen. You put a puzzle in front of him and you can practically hear Eye of the Tiger as he begins to work on it. I am hoping that the school next year will be as willing to harness these obsessions as his Autism school this year has.

A bit off topic

Normally, I will try to keep this blog as relevant to ASD and Little Bug as I can. But, as some people may not have realized, as gay parents, Prop 8 in California was very relevant to us as is the treatment of Thomas Beatie- a transgendered man who is having his second child.

Someone sent the video below to me and I watched it and was stunned- in a good way. I thought I would share it.

http://www.youtube.com/watch?v=5r7w9QimbwQ

Pain, or lack there of

One the most troubling things about Little Bug's ASD is his response to pain- or lack there of. He doesn't react to major pain. When he was 10 months old, he had a face lift procedure done on the left side of his face because he was born with a lymphatic malformation. Basically, the procedure involved lifting off the left side of his face and removing the cystic portions of the tumor. There were fibrous portions that ran through the muscles and nerves that ran down the left side of his face. Now, most children would have been quite lethargic and in pain after this procedure. Not Little Bug, when we were told he was awake, we were expecting to find him laying down in the crib barely awake and probably in pain. What we found was Little Bug jumping up and down inside the crib. The nurse looked at us and said, "I have never seen anything like this ever."

While the above seems like an extreme example, it is pretty typical for Little Bug. We took him to the beach a lot during the summer and while he wore sandals, it was not uncommon to find pieces of shells or glass in his feet later after the beach. It just didn't hurt him so we wouldn't know.

Little Bug often has bruises and cuts and scratches that can't be explained- because we don't see what happened and he doesn't tell us anything has happened. Last night was one more example. While I getting the table set and the food out for dinner, Little Bug played for 5 minutes max by himself in the living room, which for a typical 2 year old is not an unrealistic expectation or freedom. At dinner, I noticed that his pinkie finger was swollen to double the normal size and bruised. I have no explanation for this. I don't know what he could have done- we keep the doors locked and baby proofed, he doesn't have access to anything that can open and close on little fingers- like drawers, cabinets, etc.- as they are all looked up.

This breaks my heart. It makes me feel like a bad parent. But, most of all, it scares me. It scares me because Little Bug could have something serious going on with him and we would never know. That is why we co sleep with him. He used to get fevers of 104 when he was a newborn, but wouldn't cry or alert us to the fact that there was something wrong. We talked to the doctor, and she said that maybe they didn't bother him, but we needed to be mindful because he could have seizures. So he came into our bed.

It takes all my will power not to helicopter parent. We have to let him begin to become independent, but at what cost. I'm not talking about sleeping on his own or going to sleep over somewhere. I am talking about giving him small blocks of space and time- like 3 to 5 minutes- to play by himself. It is becoming increasingly hard to do.

Mr. Beatie has struck again!

(cue ominous music) My friends, I have horrible news- Mr. Thomas Beatie has done the unspeakable. He is pregnant again!

http://www.cnn.com/2008/HEALTH/11/13/man.pregnant.again.walters/index.html?iref=mpstoryview

Seriously though, good for him and congratulations on a deeply personal decision and a joyous occasion.

I heart NutriPals

Little Bug did not eat much again yesterday- 3 or 4 bites of cereal, 2 bites of spaghetti, and his handful size of fries. That's it for the whole day. DN and I are getting really stressed about this and are going to make a doctor's appointment and also talk to his OT.

I called my wonderful Grandma in an absolute tizzy over this. Her idea was Ensure. It has vitamins and minerals, and should taste okay. So off we went to the store. We bought NutriPals, which is basically the little kid version of Ensure. When we got home, I asked Little Bug if he wanted a milkshake- YUP! was his response and he ran to the couch. Sure enough, I gave it to him and he drank the entire thing in one LONG slurp.

After that his mood changed- he became less destructive and argumentative. The meltdowns over every little thing stopped. I don't know if what is going on is related to ASD, SID, or something else. Or maybe nothing at all. But, I was happy to have my Little Bug back. He probably won't be so happy once we go to the doctor's- oh well.

Dinnertime=FRUSTRATION

Little Bug has become more and more restricted in what he will eat. He used to be the kid who you put a plate in front of him and he ate it- without question. His favorites used to be asparagus, artichokes, steak, chili, sharp cheddar cheese, prosciutto, etc. Now, he won't eat them or many of his other favorites- chicken teriyaki, oatmeal, yogurt, carrots, broccoli.

At this point, we are having to make multiple meals to find something he will eat. Last night, DN made Dixie Chili for dinner- one of Little Bug's favorites. He wouldn't eat it. So, I made him a PB&J- nope, not that either. He asked for cereal, but wouldn't eat that. I tried toast- no go. I tried banana- nope.

He ended up eating corn. That's it. That was his dinner. As a parent, I worry for him. We need to take him to the doctor's just to make sure that he doesn't need more vitamins or supplements. While I don't want to force him to eat, I also don't want him to have an iron deficiency or something else.

If anyone has suggests or tips, please let us know. His OT told us that he needs to try a new food at every meal. S***- at this point, I would like to amend it to Little Bug will eat *something* at every meal.

To Grandmother's House We Go

This weekend we went to Grandma’s house. This idea was met with much excitement by Little Bug- all week he had been looking at their picture and signing GRANDMA and GRANDPA. So off we went, with laundry and Frank in tow.

Little Bug had a great time with them. He really loves how rough Grandpa is when they play together- more of that good ol’ proprioceptive input. He also loves Grandma’s cooking and her laughter. He becomes such a comedian when he is there- doing everything in his power to make them laugh. I mentioned Grandma’s cooking, but really there is something magical about it. Little Bug eats and eats and eats at their house. It is unbelievable because normally he fights eating and is pretty rigid about it. But not at their house- Grandparents have magical abilities as they manage to get grandkids to do things that mere mortals- e.g. parents- can *never* get them to do.

Another highlight of the weekend was puddle jumping. Being that we live in the Pacific Northwest, there are plenty of opportunities for it. Ever since we first did that about a year ago, walking in the rain with him is tricky because he doesn’t get that there is a time and place for jumping in the puddles and on your way to school, work, or the doctor’s office isn’t one of them. We had a blast doing it! We found one puddle that went up to my knee- which meant it was at his waist- and just went nuts! DN being the part feline person who *hates* rain watched and laughed on the sidelines. I will have to get the picture of me and Little Bug that Grandpa took when we got home, because we were just soaked. I think about these things and hope that these are the memories that he will cherish later.

Unfortunately, Little Bug got horribly sick on Sunday night. He woke up at 1:00 AM vomiting. He proceeded to vomit every 15 minutes afterward and then he developed diarrhea. I felt so bad for him because he has a really hard time vomiting as he doesn’t quite get how to motor it out of his mouth. We went through 5 diapers, 5 sleepers, and 2 baths before 3:00 AM. But, it seemed like someone flipped a switch at three and he went back to sleep.
He made some really good progress this weekend. He learned to say HALP (help) while signing HELP. He used to say “See, See” when signing it, but Saturday I taught him to say Help. He also began mimicking- something that he has been really delayed on. He and Grandma had a great time doing this.

Our darkest hour- see the vomiting episode above- ended up being our brightest hour for communication. He couldn’t tell us before that he was sick and might vomit, so it was like holding a ticking time bomb of the gastrointestinal persuasion in your arms. Sunday night, although he wouldn’t throw up in the trash can, he figured out that before he puked, if he signed HELP and pointed to it, we would know what he meant. This was huge because it was the first time we were able to know what his needs truly were and be there for them. For most of his life, we have just been guessing- educated guesses, but still guesses. I heart sign language.

We have a new sign- RUN. We also have a couple new words or “word approximations” as his therapists would call them- HALP, Uppee- Puppy, and La Lou- which is Little Buggish for I love You. That last one absolutely warms my heart. I am thinking about getting it tattooed somewhere so that I will always remember it.

There are times when I can’t help but wonder what parts of his every day cute little boy life we miss because of ASD. You know that part of life that doesn’t revolve around sensory issues, feeding challenges, vestibular input, and speech delays? I know, it sounds crazy, but it still exists. We try to every day make sure that Little Bug gets time to be Little Bug- tics and all. I know I have to remind myself not to worry so much and to sometimes just be. That one day without therapy isn’t the end of the world. Again, it’s a fine balance and I can’t say we achieve it always.

Pop go the Weasels?

I recently stumbled across and article on MSN that was entitled The 10 WORST DADS. I don't knwo why I looked, but I did. And the third worst dad of last year was Thomas Beatie. He is a transgendered gentleman from Oregon who had a baby last year. Apparently, that makes him a bad dad because "Teaching kids about sex is tough enough. But when this bearded, deep-voiced transgendered Oregon man popped out a bundle of joy earlier this year, our jobs as fathers became even more complicated: "Sit down, son. I need to talk to you about the birds, the bees…and the trannies." Oof."

That's funny, as I would think that teaching your child to love and accept people- unconditionally- would make you a good parent. Maybe I am biased as after all, I am one of those dubious trannies who had a baby too. I was on hormones for almost two years when my partner and I wanted to adopt. We were told that we couldn't adopt because being transexual is considered a mental illness- much like being homosexual was. So, we decided that we wanted a child anyway and I began the process of weening myself of of Testosterone. Eventually, Little Bug was conceived and born.

Our friends were so supportive about it- they made Nick a shirt that said- HE'S having my baby. Which ofcourse Nick proudly wore everywhere. The funny thing about this situation is that Little Bug has not had any difficulty. When people call me she or mom- he corrrects them by yelling "DA!!!!!" or signing it over and over again.

My son may have a harder time in school- he may get made fun of. Hell, he may even hate us for doing this. But, hopefully, we will have raised him right. He will know that people should be able to get married no matter who they love. That HE and SHE are simply words and what matters is a person's actions and what is in their heart. That no matter the color of your skin, who you do or do not worship, and who you have sex with, you desesrve an equal place in this world. When my job's done, he'll know.

Insurance in California

The link below goes to a story about Feda- a mother of a child who is severely affected by Autism- who has taken on Kaiser through an Independent Medical Review and was granted her requested treatments.

Please read the article and watch the videos. It seems that the crux of the question as to whether an insurance company covers items such as ABA therapy, speech pathology or occupational therapy is whether those services are deemed as "educational" or "medical".

http://abclocal.go.com/kgo/story?section=news/health&id=6493262

Silence doesn't equal stupidity

I have to say that one of things we struggle with the most is the way people react to Little Bug when they see that he uses sign language and that he can't speak. One of two things usually happen- they talk about him as though he is a piece of furniture or they begin to speak incredibly loud and slowly as though because the words aren't coming out, they aren't going in. The most interesting thing about this, is that this is what our wizard of an ASD specialist recommended. He suggested that because Little Bug has a severe delay in both receptive and expressive speech, we should talk slower to him to help him. Funny enough, all we had to do was talk with our hands, and the words followed. It had nothing to do with the speed of the communication, but the manner in which the communication was occurring.

Please remember that your ability or inability to speak doesn't measure your intelligence or ability to communicate. Trust me on this- I have met plenty of people who can use 45+ words to string a sentence together and yet the couldn't find their own asses with both hands and a flashlight. Conversely, I have met many people- Little Bug included- who are mostly non verbal and yet have an amazing amount of intelligence and problem solving. That they can't speak isn't important- we just need to find a way to connect.

ABC has had a special on everyday regarding Autism. One of the items I found most interesting were the items that included non verbal people with autism who were deemed dumb or unreachable by the establishment until given a computer. Suddenly, they had a voice. This reminds me that as caregivers, family members, friends, and members of a community, we must always reach out and be willing to reach out in unconventional ways to reach our fellow man.

Just remember, that the next time you see someone who can't speak- due to a hearing impairment, ASD, cataplexy, or a myriad of other conditions- don't assume that they can't hear you and can't understand what you are saying. You would be surprised by how much they hear and understand.